CF Goes Back to School

Sharpened pencils, new backpacks and notebooks; ‘Tis the season for heading back to school. Sending a child off to school for the first time can be an emotionally charged event. The typical anxiety level may be ratcheted up a notch for parents of children with cystic fibrosis. This does not need to be the case. With a little bit of help and a few simple tips, you can send your child to school confident that his or her CF needs will be met.

In August, 2007, we surveyed our members in a CF Parents Survey. Throughout this article you’ll see quotes by members of CysticFibrosis.com regarding their expectations, excitement, and apprehensions about sending their children off to school.

Larasmommy: "Mostly I’m worried about the germs and how sick she gets when she goes there."

Bbedrock: "Starting a school year is always exciting. My son loves to experience and learn new things and I hope that continues as he starts a new school year. The biggest fear is that he will contract something at school; he's entering third grade; it's never happened, but the fear is still there."

First Timers

Parents of younger children who are starting school for the first time or who are transferring to a different school, often worry about how much information to give their child’s teacher. The Cystic Fibrosis Research Inc. (CFRI) has an excellent publication, "CF in the Classroom". This booklet outlines the basics of CF and offers guidelines for ensuring you make the most of your child’s school experience. In order to make sure the teacher understands the material you are presenting, be sure to give it to them in person. Encourage your child’s teacher to ask questions about CF and provide an opportunity to discuss it further. The CFRI has done a wonderful job of gathering the most relevant information for parents and teachers, and combined them in this informational booklet. If your child’s school has a nurse or counselor on staff, make the information available to them as well.

TonyaH: "I always meet with his teacher before the start of school to discuss the disease, supply literature, go over his meds, etc. I also make a little trip to his PE teacher to ask him/her to be aware."

Whomever you disclose your child's health information to, remind them that because this information is health-related, it is considered private. It is inappropriate for them to share or disclose the details of your child’s condition with others, including the rest of the class. As your child progresses in school, he or she may want to let others know about cystic fibrosis. Determining how and when to do that is a matter of personal preference.

Simple Answers

The day will come when a student with CF will have to explain why he or she takes those pills at lunch time, why he or she is so skinny, or why that pesky cough never goes away.

David: "I have always told him to be honest and tell them he has cystic fibrosis and that they can’t catch it."

Depending on their age and relationship to the student, some people will ask nosey questions, and others will be genuinely interested in understanding. Many people have found the direct, non-specific or detailed approach to be the best.

Michelle43: "He made this up himself, I have CF it makes me cough and is like asthma, I have to take pills and do treatments, but I'm very lucky and healthy because my mommy keeps good care of me and I've only been to the hospital once; most CF kids go more often."

Below are some of the experiences that parents of CFers and their students have offered to explain CF to teachers and classmates.

Bbedrock: "My son's first grade year wasn't too good. The teacher admitted she felt sorry for him - no reason to; he appears and acts healthier than non-CF kids. The day before second grade started we met with everyone who was going to have anything to do with him - from the lunch aid to the phys ed teacher to the principal and went through everything CF related and the repercussions to him, emphasizing our desire to have him treated like everyone."

Consmom: "[We stay involved by] keeping in contact with the teacher, nurse and catering manager. We have an education assembly in September so he gets to show off his vest, etc. and we can explain CF to everyone."

Michelle43: "I send a "CF in the Classroom" booklet to all of his new teachers. I highlight all of the things that have to do with my son and staple a picture of Collin and phone number list where to reach me or Collin’s dr. and an invite to feel free to ask me anything and to call if he's not acting well."

Preventing Infection

Avoiding every germ is an impossible task. Getting sick is inevitable. Prevention is key, and seeking treatment at the first signs of infection is a must. Some of the basic ways to prevent illness include:

1. Vaccinations
   Flu (yearly)
   Pneumonia (every 5 years)
   
   
2. Hand washing

One of the most important things a child with CF can do to stay healthy is to minimize exposure to germs and harmful bacteria. Frequent hand hygiene, which includes washing one’s hands with soap and water, and/or using alcohol-based hand gel, is best. A good rule of thumb is if there is visible dirt on a child’s hands or the child has just used the restroom, he or she should use soap and water. After sneezing and coughing, an alcohol based gel or antibacterial wipe is sufficient.

TheDickens: "Make sure your child keeps his/her hands clean and try to keep a safe distance from children with colds and other illnesses."

Making the Grade: Keeping Up Despite Absence

Frequent absences from school are sometimes part of life with CF and can make both students and parents anxious. It is important for students to keep up with their peers in terms of coursework to the greatest extent possible. This is where an Individualized Education Plan (IEP) and the Americans with Disabilities Education Act (IDEA) serve a purpose. Another law that protects students with health impairments is Section 504 of the Rehabilitation Act of 1973, which offers modifications for students who need it.

Jane: "My kids both have a 504 plan to help with accommodations. I have found most teachers and school staff to be very helpful. I teach in the same school as my children, so I am on top of things."

It is best to have an IEP or 504 plan in place before the student becomes sick. This way, no additional time is lost trying to establish whether the student needs special accommodations.

David: "[My advice to parents is to] set up a 504 plan so that he can use the restroom when needed as well as make sure he is allowed to carry some kind of bottle with him for drinks."

Sample modifications for elementary/secondary education might include:

1. Student carries and takes own enzymes
2. Student may sit at a desk away from classmates who have colds
3. Snacks are permitted during class time
4. Child does not need to ask permission to go to the bathroom or to get a drink
5. Second set of textbooks for home

Section 504 also applies to colleges, graduate schools, and any other institutes of higher education that receive federal funds. Under Section 504, institutes of higher learning cannot refuse to accept students based on their disabilities. The school must provide accommodations if the student is accepted.

Depending on the school’s schedule and an individual’s stage of disease, an IEP may be required. Additionally, it ensures that the school is compliant with the IDEA, and will make reasonable accommodations for students in need. This is especially valuable for college students. Note-taking services or extended deadlines for coursework might be required in the event that the student experiences an exacerbation and cannot attend class.

A Balancing Act

Keeping up with health care in addition to a school schedule, extra curricular activities, and homework can be tiresome. It’s important that students learn effective time management skills and self discipline in order to balance the demands put upon their time and energy. Here are some strategies employed by members of CysticFibrosis.com:

JORDYSMOM: "The week before school starts, earlier bedtimes start. To ensure that things are going smoothly at school, I just communicate with him daily about how he feels, how his day went etc."

Kelli Myers: "As a former teacher, I think it is important for the parent(s) to meet with the teacher, explain the disease, and leave a typed list of instructions/helpful hints. Also, let the teacher and school nurse know of any med changes, illnesses, etc. and specify if the matter is a private matter (not to be shared with classmates, other parents, etc.)."

Michelle43: "Good communication is very important. The nurse checks Collin's temp at lunch for me if I think he may be coming down with something or I let the teacher know that we're increasing his treatments and the albuterol may make him fidget and lose concentration in class. I also mention to the gym teacher that it's so hot out that Collin has needed extra salt tabs at home; I usually see the gym teacher daily. I had one teacher’s aid who was sort of snotty and when she saw a list of Collin's meds by accident her whole attitude changed and she started asking questions, and she is much more understanding towards my son now. Sometimes education is all that's needed."

Conclusion

Starting school or going back to school can be an exciting while somewhat nerve-wracking experience. When parents, students, and educators work together, students with CF will benefit fully.

With the newest advances in medications and treatments for cystic fibrosis, more and more patients are able to not only graduate from high school, but go on to institutes of higher learning. The future for students with CF is growing brighter every day.

Restrictions on Activities for Kids with CF?

Children with CF can and should do as much physical activity as their peers do. Regular exercise, especially anything that gets the heart rate elevated and forces a child to breathe more forcefully is a good way to improve lung health. Regular vigorous exercise is beneficial for the patient with CF, and should be encouraged. There are few, if any,activities that the individual with CF cannot participate in, however on occasion contact sports are discouraged due to the positioning of implantable venous access devices.

Another benefit of any organized group activity or sport is that it teaches your child discipline and the importance of being part of a team. As your child gets older, discipline will be key in keeping them compliant with their medications for CF. Also, by learning to be a team player, they will gain an appreciation for how important it is to be an active participant in their health care at the CF Team Clinic.

For a sample list of activities for people with CF and the pros and cons of them, please read the following article:

No Limits on Activities for Children With Cystic Fibrosis

Transitioning to Adult Care

Cystic fibrosis has long been considered a disease that affects mainly children. Many CF patients are seen by a pediatrician from infancy well into their early twenties. Thanks to earlier diagnosis and more effective therapies that can be done early in a child’s life, these children are well on their way to a healthy adulthood.

But what about those years in between? How can parents prepare their children for the transition to adult care? When should the child begin taking responsibility for their own medical needs? What are the things that children need to learn before they’re ready for the transition?

Cystic fibrosis patients and their physicians, especially the pediatricians and the rest of the CF Team, often form strong bonds. Together the patients, their parents and the doctors have learned how to deal specifically with the individual. This tremendously supportive network takes years to build, and the thought of walking away from it all to begin with a new doctor and an unknown CF team can be frightening. The fear of the unknown and the worry about having to start all over with someone new can fill a CF patient with anxiety.

Patients who have a great deal of self-confidence and a solid understanding of their particular needs as a CF patient handle the transition much better than those who have never involved themselves in their own health care. Preparing to transition to adult care is just that—a transition. As the parents gradually take a lesser (but no less supportive) role in their child’s health care, the patient gradually learns to take control. Ultimately this promotes self-esteem, a sense of empowerment, and even better health for those who are compliant with doctor’s orders.

Studies have proven that people with chronic diseases who frequently set challenging but reasonable goals for themselves are better able to cope with the world around them. They are able to manage their disease with an optimistic yet realistic attitude. This contributes to a greater overall quality of life.

The files below are something of a game plan. The goal: being well prepared to leave the pediatrician as a confident, competent adult who knows how to cope with CF on its many levels and to have the best quality of life possible. Please note that these files are for disabilities in general and aren't specifically targeted to cystic fibrosis.

Health Care Transition Workbook (English, age 12-14)
Health Care Transition Workbook (Spanish, age 12-14)

Health Care Transition Workbook (English, age 15-17)
Health Care Transition Workbook (Spanish, age 15-17)

Health Care Transition Workbook (English, age 18+)
Health Care Transition Workbook (Spanish, age 18+)

Career Spotlight: Architectural Designer

Just because a person has cystic fibrosis doesn’t mean they can’t plan for and enjoy an interesting, fulfilling and challenging career. People with CF have virtually endless options available to them when it comes to the future. Improved therapies, better health education and a “can do” attitude are just a few of the ingredients that go into making life’s goals a reality.

Meet Amy—a 27 year old adult with cystic fibrosis. She is just one of many adults with who has answered the call to the work force. A full time architectural designer, she enjoys the challenge of using her computer skills to create architectural drawing to be included with construction permits. “I love my job,” she says. Rendering, which is creating color drawing by hand “is my absolute favorite thing.”

Like other adults who have to find a way to combine their creative passions and pursuits with the ever-present need to maintain good health. Amy’s work ethic and how she manages her workload stems largely from the skills she has utilized for managing life with cystic fibrosis. “With CF you must be very diligent and pay attention to the details” she explains. She recognizes that this is important not only for keeping on top of her health, but “with my job as well.”

Initially Amy was concerned about how to inform her employer about her disability. To her relief, she found her employer to be very accommodating to her needs as a CF patient. Her 8:30 to 5:30 schedule isn’t very physically demanding, but the projects that land on her desk often have sensitive deadlines that must be met. Nonetheless, “I’ve not had any problems with taking time off,” she explains. “We can come and go” for necessary doctor appointments. Her employer only requests that she adjust her schedule to make up any time missed for such things.

Some cystic fibrosis patients worry about their job security, especially if they must be hospitalized for a lengthy period. Time spent away from the office while on sick leave or disability cause a lot of worry and anxiety. Fortunately for Amy, her employer and her coworkers were supportive when she hit a rough patch with her health during the winter.

“I became sick and needed to go inpatient. I told my employer then [that I have cystic fibrosis]. They were very supportive and when I went back in less than 2 months later there were no issues [about job security].”

What does the future hold for Amy? She admits that her health isn’t as strong as she’d like it to be. When asked about how hard she plans to work in the future, she candidly shares “I am considering going part time this year.” She is hopeful that her health will improve once she takes a lighter schedule at work, and that she can work awhile longer before needing to leave work permanently.

Amy sets a positive example for younger patients who may be struggling with their disease. She keeps from focusing too much on herself by doing things to reach out to other members of the community who have chronic conditions. For example, she recently donated her beautiful, long hair to “Locks of Love” a charity that uses donated hair to make lovely wigs for cancer patients who have lot their hair from chemotherapy.

Her advice for others who may be interested in working in the field of architectural design? "Take some drafting classes and design classes at a local community college." She also recommends looking through design books, and encourages future architectural designers to "be prepared to work very hard in school."

Nasal Irrigation

Cystic fibrosis patients are prone to nasal congestion, which can inflame the upper respiratory tract and lead to sinus infections. One of the ways to help keep the sticky mucus from staying trapped in the sinuses is to gently flush them with a saline solution. Such rinses are effective in reducing the inflammation and clearing the symptoms of allergies or rhinitis.

Commercially available sinus rinses and saline sprays are available in different concentrations of salinity. Some kits come with the salt water already mixed, while others require you to add a salt packet to warm water that you put into specifically designed container such as a squeeze bottle.

To make your own saline rinse, you can follow this easy recipe:

Isotonic saline

½ teaspoon of sea salt or kosher salt

1 cup of warm water (or room temperature will do)

½ teaspoon of baking soda

Combine all ingredients in a cup or bowl. Using a bulb syringe, draw the salt water into the bulb.

Proper administration of a saline flush is necessary in order to reap its benefits. A thorough flushing can be a messy process, so it’s best to lean over the bathroom sink or shower when rinsing with it. Start by tilting your head down toward the bowl of the sink. Leave your mouth open. With the filled bulb syringe (or squirt bottle that came in the kit) squeeze firmly into one nostril. The water should flow out the other nostril. If your sinuses are quite congested, some water may flow down the back of your throat and out your mouth. This is normal. Continue rinsing with the other nostril.

Follow up the procedure by gargling with water. This will keep the salt from irritating your throat and causing a cough reflex.

A more aggressive way to flush congested sinuses is to run the saline mixture through a Water-Pik. Don’t use the attachment as is; cut it back about an inch so that the pressure of the water coming out is reduced. This method is quite effective for dislodging stubborn mucus that lingers following a sinus infection. Water-Pik now makes a nasal flush attachment tip that makes flushing your sinuses even easier.

Hypertonic saline is useful in stimulating the linings of the nasal passages to produce some moisture of their own. This helps give the mucus a more slippery surface to slide across, making it easier to clear out any congestion. Hypertonic saline is a saltier concoction and therefore may sting sensitive sinuses. It’s best to slowly increase the salinity (saltiness) of the rinse solution by adding gradually more salt.

CF Patient Preferred Sinus Rinse Products

• Breathe Ease
• Ocean
• Oasis
• Salt-Air

How To Be a Good Patient

Doctors, nurses and respiratory therapists agree that when it comes to being a good patient, individuals who have cystic fibrosis tend to lead the pack. Although they develop some of their “patient personality” largely out of necessity, there’s no question about their ability to face the challenge of CF with every ounce of dedication and diligence they have to give.

Good patients typically embody the following qualities:

1. Actively involved
2. Self-awareness
3. Inquisitiveness
4. Willingness to learn
5. Compliant

-Active Involvement-

Being actively involved in your own health care is just one of many ways to take back some control in what is largely uncontrollable. You may not be able to avoid catching a bacteria or virus from the world at large, but you can be proactive in remedying it. A patient who is actively involved in their care understands the importance of making appointments in advance even when they don’t feel particularly sick. They know that managing CF requires ongoing monitoring of their status, particularly when it comes to charting the results of pulmonary function tests (PFTs) and sputum cultures. An actively involved patient understands the value of “an ounce of prevention.”

Good patients who are actively involved in what their doctors are doing, often bring along a supportive friend or family member to their clinic appointments. A second set of ears to hear what the doctors have to say is a good way to make sure you don’t miss anything important or new. Active involvement may also involve bringing a notebook to each appointment to record the doctor’s instructions and recommendations. Making lists of questions for the doctor ahead of time, as well as a list of any medications that need refills are things that good patients do to stay on top of things.

-Self-Awareness-

Similar to being actively involved in your health care program, you must be self-aware. By learning what constitutes your particular “base line” or “status quo” you will be more adept at recognizing when things are starting to decline. For example, if your cough is usually dry and tight but starts to become wetter and more productive, you get on the phone to schedule an appointment at the CF Clinic.

Another aspect of self-awareness is that you have a healthy attitude about your limitations because of CF. You are able to live life to the fullest, but do so without exhausting yourself or putting yourself in harm’s way. A good patient who is self-aware knows how to set appropriate boundaries to keep friends and even family from pressuring you into giving too much of yourself.

Patients who are self-aware are honest with their doctors about the non-physical aspects of life with CF. They understand that the emotional burden that comes with having a chronic condition like CF is sometimes too much for one person to bear. A good patient asks for help when they feel overwhelmed.

-Inquisitiveness-

Good patients ask questions and expect answers. They ask medical professionals about any new treatments or medications they’ve heard about or read about online. An inquisitive nature not only helps a CF patient understand his or her own body, but enables them to gain clearer understanding of what the doctors are doing and why.

An inquisitive patient does not assume that s/he has all the answers. Patients who are inquisitive don’t assume that everything they read on the Internet about CF is true or applicable to their individual situations. They bring their questions to the professionals and ask for clarification. They respect the doctor’s expertise and training, and ask questions about things they don’t understand. A good patient is not afraid to ask a doctor to explain things more than once. After all, cystic fibrosis has so many facets, it’s unreasonable to expect to learn it all in a short clinic appointment.

-Willingness to Learn-

When a doctor recommends a new course of treatment or a new therapy, a good patient is willing to learn to adapt. Instead of refusing to try something unfamiliar, they give it a fair chance before making a final decision. For example, if your doctor recommends that it’s time to get a port-a-cath instead of a PICC line, a good patient will be willing to learn why this is so. Similarly, if a patient is diagnosed with cystic fibrosis related diabetes (CFRD), the willingness to learn how to manage the new condition should override any desire to complain or become depressed at the news.

Although there is certainly a time and a place for complaining and “venting” about the struggle of life with CF, a patient with a healthy outlook and willingness to learn will be able to successfully balance it all with a bit of help. Patients who are willing to learn are not afraid to step outside their comfort zones and learn how to let other people help them with things.

-Compliant-

Rarely are cystic fibrosis patients 100% compliant with all their treatments and medications, though there are some who set the bar quite high! Compliant patients stand a much greater chance of finding a sense of peace and acceptance of their disease. Patients who are compliant can rest assured to know that they are doing everything within their power to make their lives as full and beautiful as possible, even with CF.

Doctors appreciate their patients who are compliant, because it makes their jobs a bit easier. For example, if a patient is compliant to take their enzymes as directed suddenly begins to have a change in their bowel movements, the doctor will know that either the diet has changed or the enzymes are no longer effective at that particular strength. Less time is wasted in trying to find an appropriate solution.

Compliant patients keep their appointments. They understand the need for preventive care in treating cystic fibrosis, and they take every opportunity to monitor their health.

Managing life with cystic fibrosis can be tough, but it doesn’t need to be overwhelming and depressing. If you work on being a good patient, chances are you’ll cope with the disease much better.

Spotlight On: ShopforCF.com

There's nothing that inspires me more to be active and compassionate in the CF community than to see others with CF doing great things. I'd like to tell you about a website that is doing just that. ShopforCF.com is just one recent example of one person's commitment and drive to do something positive for the CF community. Ronnie, a cystic fibrosis patient in Arizona, started the site as a way to raise money for cystic fibrosis research.


Here's what Ronnie has to say about the site's goal and purpose:

The sole purpose of this website is to raise funds for Cystic Fibrosis research, so people that live with the disease might have a chance to have a fuller, longer life. The way this happens is through money donated to the Cystic Fibrosis Foundation who in turn supplies pharmaceutical companies with the necessary grants and funds to continue vital research. The ultimate goal of course being, to find a cure for this disease that affects roughly 35,000 patients.

The cost of life-saving research is high, and so are the stakes. The Cystic Fibrosis Foundation is the leading and nearly sole provider of the funds needed for CF research. Sources estimate that just 5 minutes of research costs $1,200. That's a mighty steep bill when you consider the length of time it takes to develop a new product and make it available to cystic fibrosis patients ShopforCF.com is helping put a few more pennies in that piggy bank with each transaction initiated through its site.

100 percent, as in ALL of the proceeds generated by ShopforCF.com are donated directly to the Cystic Fibrosis Foundation. There's zero effort on your part. All you have to do is shop online as you normally would availing yourself of the links on the ShopforCF.com site. I know it's tax season and the economy isn't booming, but please consider spending your money on ShopforCF.com before you use another online retailer. You'll feel good about your purchase, knowing that you have helped improved the quality of life for me, Ronnie, and the thousands of CF patients worldwide.

SHOPFORCF.COM Main Site

ShopforCF.com Affiliate Directory

Read About Ronnie, the creator of the site

Please stop by, do some shopping and let Ronnie know what a great thing he's doing.

The Choice for Children

For decades women with cystic fibrosis were told not only that they shouldn’t expect to have children, but that they possibly couldn’t even withstand a full term pregnancy. Much has changed in recent years, particularly in regard to the mean survival age of patients with CF being nearly 37 years. Even so, the choice for children is a matter that weighs heavily on the hearts and minds of couples with cystic fibrosis.

Some women with CF feel very strongly about bearing biological children. This decision is just one of a myriad of difficult ones that adults with CF face. Discussing these things with the CF specialists, not to mention a potential spouse, should take place frequently and candidly. Matters of family planning and contraception are best not left to chance. Depending on a couple’s moral or religious convictions, discussions with their clergy or other leader in their religious community may help the decision process.

The experiences and situations of families in which women with CF are becoming mothers are every bit as diverse as the families themselves.

Couples who decide not to have biological children or even to adopt, face just as many emotional challenges as their parenting peers. Coming to terms with the limitations of a couple’s physical, mental, and emotional resources takes a great deal of introspection and self-awareness. One of the most important things to keep in mind is that there is such a thing as a two person family.

Men with cystic fibrosis are up against a different challenge when it comes to fatherhood. Many cannot father a child without medical intervention, and may need to consider different alternatives with their wives.

People with cystic fibrosis carry a great deal of weight upon their shoulders when they consider the biological ramifications of bearing children. There are those who believe it is simply unethical to produce children who will have a high likelihood of testing positive for cystic fibrosis, or will undoubtedly be carriers of the deadly gene. Others believe that by curtailing reproduction, God is affronted.

No matter which decision a couple with cystic fibrosis makes, friends, family, and even the CF team, should respond with grace and respect. Living well with cystic fibrosis requires positive input and support from many sources, all of which promotes better quality of life.

Surviving the Rollercoaster of Teen Rebellion in CF

Teenagers and young adults rebel. It’s what they do. Pushing the limits and testing boundaries is part of the process of developing self-identity. Watching your “baby” seemingly disregard a more than a decade’s worth of instruction and wisdom is, no doubt, a frustrating and frightening time for parents. That feeling is compounded ten-fold when your teen has cystic fibrosis, and the rebellion manifests itself as non-compliance or outright refusal to participate in the daily rigors of caring for his or her health.

Some adult cystic fibrosis patients confess that they rebelled in the following ways during their adolescence:

- “forgetting” to take enzymes with meals

- Hiding multivitamins and other medications in the houseplants

- Throwing away their sack lunches at school because they were embarrassed to have to eat so much

-turning on the nebulizer/compressor so it would make noise and fool parents into thinking a treatment was being done

-lying to the CF doctor about taking medications

-engaged in reckless behavior because they believed they wouldn’t live to be an adult

Here are some suggestions and considerations for parents whose teens are in the throes of out-and-out rebellion against cystic fibrosis:

Remember that rebellion is normal. Even if only for a moment or two, be glad that this phase of your son or daughter’s life is normal and typical teen behavior.

Rebellion can serve as a path to greater self-awareness for your teen. Allow him or her to make mistakes and suffer the natural consequences. As s/he pushes against the limitations of cystic fibrosis, s/he will learn what happens when the body is deprived of what it needs to function well with CF. This in turn, will help your teenager to be better prepared to identify what is “normal” and healthy, and what is not. Think of it as a training exercise for the day when your teen will be off on his own and will have to make his own decisions about when to call the doctor.

Do keep a watchful eye on your young adult, but resist the urge to argue over compliance issues. Develop a discipline system that works best for your family, and implement it as you see fit. For younger teens, you may want to use a reward system. Teach them that failure to do the required things such as medications and treatments, means a loss of privileges of the more amusing and enjoyable aspects of life, such as having friends over, going out to a movie, etc.

Rarely does this rebellion become life-threatening. If your teen is in relatively stable condition with respect to lung health, a short season of rebellion is not likely to trigger an acute or dramatic downfall. Although it’s inevitable to remain completely unscathed when refusing to take medications or properly care for one’s body, many cystic fibrosis patients, now in their adult years, are none the worse for wear despite their turbulent teenage years.

Don’t argue with your teen in an attempt to get him or her to understand that failure to comply with treatments now could mean he or she will die younger. Although you as a parent can see the potential long-term benefits of compliance, that line of thinking simply doesn’t penetrate the thick skulls of young adults. Whether you consider your teen to be very mature for his or her age, or very smart about CF doesn’t matter. They will be in a state of somewhat ignorant bliss of the complications of CF until they are adults and have to manage every facet of their health regime themselves.

Make the most of opportunities to talk to your son or daughter about the frustrations of cystic fibrosis, but don’t dwell on every negative aspect of it. Remind him or her that it’s okay to need help with the emotional side of things, and ask if he or she would be interested in talking to a professional or non-family member (such as a clergy member) about what is going on. If he or she is not interested, don’t force the issue.

If your teen’s rebellion takes on a truly unhealthy form--such as experimentation with illegal recreational drugs and alcohol abuse—or begins to change into depression or self-mutilation, take action. Coping with cystic fibrosis is difficult enough without these added challenges.

Teens with cystic fibrosis will rebel just as their peers will. How long this turbulent phase and wild ride will last depends on the individual. The role of parents during this time is to help steer their adolescents safely through this period with as little heartache as possible. Parents, you are not alone in this frustrating battle, and neither are your kids.

Adoption and Cystic Fibrosis

Today's Q&A is courtesy of Laura Christianson, author of The Adoption Decision and The Adoption Network.

Q. If I have a chronic medical condition, will it exclude me from being eligible to adopt a child?

A. Not necessarily. While adoption professionals do evaluate the health of the prospective adoptive parent(s), their main concern is whether a person's health issues will interfere with or prevent that person from being an effective parent.

If you have a chronic medical challenge and want to adopt, it's important to share openly and honestly with your adoption social worker, and explain the ways in which you are being proactive about managing your health issues. Adoption social workers aren't looking for excuses to turn prospective parents down; they are looking ways to say "yes."

I know several adoptive parents who have chronic medical conditions—they often adopt a child who has the same condition. Adoption social workers are delighted when this happens, because children with medical issues are considered "hard-to-place." When a parent adopts a child who has the same medical challenge, the child often receives the best treatment possible because the parent knows exactly what the child needs.

Laura is a freelance journalist specializing in adoption-related issues. She is the author of The Adoption Decision: 15 Things You Want to Know Before Adopting and The Adoption Network: Your Guide to Starting a Support System.

Her Exploring Adoption blog received Forbes magazine's 'Best of the Web' rating. Laura has written numerous general-interest features and essays for national and regional publications. She speaks regularly at writers' conferences and other events.

Newborn Screening for Cystic Fibrosis Offers Hope

Imagine how difficult it would be as a parent, to take your sick child from doctor to doctor, and none knew what was wrong. The doctors seem to think your baby is merely battling a stubborn cold, or has food allergies of some sort. You know that can’t be the correct diagnosis, so you exhaust yourself searching websites that describe your little one’s symptoms, but never can quite put your finger on anything that explains it. Then you find it.

Cystic fibrosis.

Cystic fibrosis is the most common genetic disease affecting the Caucasian population. It is caused by a mutation in a particular protein in a person's DNA. This mutation causes a malfunction in the sodium and chloride transport channels. As a result, large amounts of salt are secreted in the sweat of a person with cystic fibrosis. Additionally, the body produces abnormally thick, sticky mucus which creates problems for nearly every major body function, particularly the respiratory and digestive systems.

People with cystic fibrosis are prone to frequent bouts of pneumonia and other lung infections. This is because bacteria become easily trapped in the sticky mucus that blocks the airways. Airway clearance devices and preventive maintenance medications are typically used to avoid infection. Such methods include inhaled antibiotics, bronchodilators, aerosolized medications, and chest physiotherapy.

Digestive problems also arise due to the thick mucus in the intestines and around the pancreas. Pancreatic insufficiency results when the pancreas cannot secrete the necessary enzymes to break down food. Enzymatic supplements are taken orally to aid in digestion. However, even with the supplements, people with cystic fibrosis are typically malnourished because the mucus lining the intestines prevents major vitamins like A, D, E and K from being properly absorbed into the body.

Treatment of cystic fibrosis
Over the last two decades there have been incredible developments in the treatment and understanding of cystic fibrosis. Ongoing research and the development of new medications are enabling some cystic fibrosis patients to survive into adulthood-something that was virtually unheard of in the past. Unfortunately, a cure remains to be found. The Cystic Fibrosis Foundation reports that the mean life expectancy is a mere 36 years of age.

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You’re stunned as you read about it. It sounds so scary, but all the symptoms add up and are exactly what your child has been experiencing over the last year or more. Loose, greasy, smelly, bowel movements; persistent cough and recurring lung infections; digestive problems; failure to gain weight; those funny shaped fingers. The list goes on and you can hardly process it. You are frustrated that the doctors never even thought of testing your child for this monster disease, and you wonder how much damage may have already been done to your little one’s body. You are angry, confused and sad all at once and your only thought is to get your child tested for cystic fibrosis as soon as possible.

Now imagine the empowerment of knowing as soon as your baby was born, about the unique health care requirements he or she would need. You and the doctors could work together to devise a treatment plan that would ensure the best possible health and quality of life for your son or daughter. Instead of fear of the unknown, you are given hope for the future.

Mandatory newborn screening for cystic fibrosis is not yet widespread. As of June, 2007, only 38 (see list, below) states in the U.S., including Washington D.C., had mandatory screening programs in place. Although more are planned, they cannot be implemented soon enough.

States with Mandatory Cystic Fibrosis screening for Newborns

Alabama*
Alaska
Arizona*
California
Colorado
Connecticut
Delaware
District of Columbia
Florida
Georgia
Hawai'i
Illinois*
Iowa
Kentucky
Maryland
Massachusetts
Michigan*
Minnesota
Mississippi
Missouri*
Montana
Nebraska
New Hampshire
New Jersey
New Mexico
New York
North Dakota
Ohio
Oklahoma
Oregon
Pennsylvania
Rhode Island
South Carolina
South Dakota
Virginia
Washington
Wisconsin
Wyoming

* these states have not yet implemented their mandatory screening program

According to the Cystic Fibrosis Foundation, the nation’s largest provider of funding for CF research, “Early diagnosis allows for immediate intervention with specialized therapies” which “have been shown to result in improved height, weight and cognitive function, and also may help maintain respiratory function. The greatest long-term benefit of newborn screening and early intervention is an increased life expectancy fewer hospitalizations over the course of a CF patient’s lifetime.”

California is the most recent state to require mandatory screening in newborns. It is the hope of many that the remaining states will soon be on board with this potentially life-enhancing measure. The following states have yet to mandate a newborn screening process for CF:

Arkansas
Colorado
Idaho
Indiana
Kansas
Louisiana
Maine
Nevada
North Carolina
Tennessee
Texas
Utah
Vermont
West Virginia

If your state is one of those listed above, consider taking action. Let your legislators know that it's important to implement newborn screening for CF. Here's how you can make that happen.

1. Contact the state health department to find out if CF is being considered for newborn screening.

2. Call or write to your governor. Visit the Web site of National Governor's Association www.nga.org to learn how to contact your governor.

3. Call or write the state legislators. www.ncsl.org is the website listing all the contact information for your state.

Partnership between Patient and Physician

Back when I was in college, I was still attending a pediatric CF clinic. My doctors were wonderful and knowledgeable--about pediatric things. Basically whenever I came in for an appointment it was because I needed something. I would request to start IVs on such-and-such a date because it worked well with my course schedule. When claritin didn't seem to be helping me take care of my allergy symptoms, I told them I wanted to be switched to Zyrtec.

Primarily they may have seemed like mere suppliers, but there was much more to it than that. I saw them not only as suppliers, because together we had developed a real synergy. They knew I was serious about my health and that I was good at reading my own body. They gave me the freedom to be an independent CF adult, and reminded me that they were always there for me when I needed them. My stage of CF at that time was quite routine, which is also why I saw them as suppliers. There were really no surprises with my health.

It came to a point however, where I had truly outgrown the pediatric clinic. They sat me down and said "we'll be happy to keep seeing you, but we think you'd benefit from the adult clinic." They left the decision up to me, again reinforcing the importance of being my own advocate when it came to my health.

Now that I'm at an adult clinic, I see things as a partnership. I tell my doctor what's going on, and he tells me how to manage it. He always lays out a few options for me, and together as a team, which includes my wonderfully supportive husband, we decide what is the best course of action for my health and quality of life. There have been new challenges over the last couple years. Things that were unfamiliar to me, which is why I needed to rely heavily on my doctor's expertise.

Even with all his knowledge of CF, he's still learning the specifics about ME. That's where our partnership comes in again. It's a give and take. He needs me to communicate with him effectively about what's working or not working for me; I need him to take my feedback into thoughtful consideration and present the best plan to meet my needs. When that happens, I benefit tremendously.

I like being actively involved in my own health care. I like knowing how and why things work--that's just my nature. On the other hand, I like the freedom of not having to be the one with all the answers. Because I have a doctor I trust, I don't have to waste precious energy second-guessing his opinions or treatment plans.

Social Security Administration's Defintion of Disabled

How does Social Security define

By Scott Davis, Esq.

Have you ever wondered what the “definition” of disability is? I know you have…we all believe we know “who” is disabled and “who” is not. Heck, you can tell just by looking at a person! Doctors are usually certain they know whether their patients meet the “definition” of disabled.

The obvious question becomes…whose definition of disability are we talking about? If you think everyone, including the Social Security Administration (SSA) are on the same page…think again! This article is my humble attempt to educate everyone, including physicians, regarding SSA’s definition of disability. Please understand it is difficult to capture the entire definition in a short article; however, it is possible to set forth a general framework.

First, allow me to debunk several longstanding myths about what is means to be disabled.

Myth #1 You have to be Totally Disabled to be eligible for Disability Benefits

Not true. I am not sure what “totally” disabled means; I do know it is a term of art our society uses, but not one SSA uses.

I suspect that if you put 100 doctors in a room and asked for a definition of “totally disabled,” you would get many different answers. My guess is that it means one is unable to function at all in any capacity.

In general, to be eligible for disability benefits, SSA does require that you not be working in any capacity. However, this does not mean you have to be to physically and/or psychological unable to function in any capacity.

Myth #2 You have to be Permanently Disabled to be eligible for Disability Benefits

Not true. Again, I am not sure what “permanently” disabled means; it is a term of art our society uses, but not one SSA uses. If a doctor supports a patient’s claim for disability, they will frequently state the patient is “permanently” disabled. The statement may be true in many cases, but my experience is that most people who apply for disability benefits with SSA are not “permanently” disabled. Even if they were, it is usually too early to tell if a 45 year old will return to work before the age of 65.

Thankfully, SSA does not require that you be permanently disabled. In fact, the issue of whether a disability is or can be permanent is never an issue at SSA.

What is SSA’s Definition of Disability?

Simply put, SSA and federal law defines disability as follows, “The inability to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months.” (citing 42 U.S.C. §§ 423(d)(1)(A) and 1382c(a)(3)(A).

First, please note that SSA’s policy is that disability can be due to any medical or psychological diagnosis (disorder). Second, contrary to popular myth, SSA does not require that you be “totally” disabled. Third, with regard to duration, the impairment does not have to be permanent, it only has to prevent you from working for a minimum of 12 months.

© Copyright 2002, Scott E. Davis, P.C., Used with Permission
All Rights Reserved Worldwide

Scott E. Davis is a social security and long-term disability insurance attorney in Phoenix, Arizona. Mr. Davis represents clients throughout the United States. Although Mr. Davis has experience representing clients with a broad spectrum of physical and/or psychological disorders, the majority of his disability practice is devoted to representing individuals with chronic pain and chronic fatigue disorders. In almost every case, a fee is charged only if his client obtains benefits. Mr. Davis invites your questions and inquiries regarding representation via his web site.

50 Ways to Encourage a Chronically Ill Friend

By Lisa Copen

"A good friend is a connection to life - a tie to the past, a road to the future, the key to sanity in a totally insane world." ~Lois Wyse

1. Ask, "What events in your life are changing and how are you coping with the changes?"
   
2. Understand that she lives in a constant state of making decisions for which there is no guarantee that she is making the right choice.
   
3. Put meals in disposable containers and attach a note saying "This doesn't need to be returned."
   
4. Add stickers to envelopes for a cheerful touch.
   
5. Arrange for your friend's kids to have a night with your children.
   
6. Don't make a person into a project.
   
7. Ask, "Would you be willing to talk to a friend of mine who has recently been diagnosed with a chronic illness and offer her some encouragement?" It makes one feel good to know that her experience can offer someone else hope and that God still has a purpose for her life.
   
8. Wash his car and put a little note inside for him to find later.
   Remember important anniversaries, both the good and the bad. No one else will.
   
9. Ask, "Do you want company the day that you wait for the test results? I could come over for a couple of hours."
10. "No matter how little you have, you can always give some of it away." ~Catherine Marshall
    Just listen . . . until it hurts to not say anything. And then listen some more.
    
11. Ask her, "How do you feel God is working through-or despite-this illness in your life? I'm interested."
    
12. Ask, "What do you wish people understood about your illness?"
    
13. Don't make her feel guilty about things that she cannot do.
    
14. Treat her to a gift of movie rentals via postal mail through a service ($7-15 a month).
    
15. Ask, "Would you be comfortable with having your name on a prayer list, so that others can pray for you?" Don't assume.
    
16. Instead of saying, "I will pray for you," say, "I'd like to pray for you right now, if that's okay."
    
17. Mop the floors.
    
18. Ask if she would be interested in writing something for the church newsletter, maybe even about the subject of living with chronic illness.
    
19. Buy a brightly colored umbrella as a gift.
    
20. Ask, "Do you have an errand I can run for you before coming over?"
    
21. Ask her to do spontaneous things, like go to a concert in the park, or just for a picnic. She may be more likely to participate since she knows if it's a good day or a bad day.
    
22. Don't say, "So, why aren't you healed yet?" or "I wonder what God is trying to teach you that you just aren't learning!"
    
23. For a unique gift, provide brightly colored paper plates, napkins, and utensils in a gift bag with a note that says "For when you don't feel like doing dishes."
    
24. Get her a pretty box to keep all of her notes of encouragement. Remind her to get it out and read things when she is feeling down.
    
25. Be her advocate. If you are at an event and walking/seating is an issue because of her disability, ask her if she'd like you to take care of it. If she says you can, be firm but not rude. Don't embarrass her by making accusations of discrimination or by making a scene.
    
26. Ask, "Would you be interested in a prayer partner from our church?"
    
27. Purchase matching coffee mugs for you and your friend, and then commit to pray for one another each morning while using them.
    
28. Say, "While you're in the hospital I'd be happy to take care of your pet."
    
29. Don't tell her about your brother's niece's cousin's best friend who tried a cure for the same illness and. . . (you know the rest).
    
30. Find out which charity is most important to her and then give a donation in her honor.
    
31. Ask, "What are your top three indulgences?" and then spoil her soon.
    
32. Hold the door open for her. They are heavy!
    
33. Don't tease her and call her "hop along" or "slowpoke." Comments you mean in fun can cut to the quick and destroy her spirit. Proverbs 18:14 says, "A man's spirit sustains him in sickness, but a crushed spirit who can bear?"
    
34. Say, "I know you must need someone to just vent to occasionally. I may not fully understand how you feel, but I'm here to listen anytime."
    
35. Ask your church youth group to come over and clean up the yard during seasonal changes.
    
36. Don't ask her, "How are you able to make it financially?" If she wants to share a burden she will.
    
37. Ask, "What would you advise me to look for in a new doctor?"
    
38. If your friend has a disabled parking placard and you are driving, allow her to tell you where she wants to park. If she's feeling particularly good that day, she may not want to park in the "blue space." Don't be disappointed that you'll have to walk farther.
    
39. Don't gossip about others. She'll wonder what you say about her. "Do not let any unwholesome talk come out of your mouths, but only what is helpful for building others up according to their needs, that it may benefit those who listen" (Ephesians 4:29).
40. Proverbs 25:11 says,
    "A word aptly spoken is like apples of gold in settings of silver." Be kind, gentle, and respectful.
41. Accept that her chronic illness may not go away. If she's accepting it, don't tell her the illness is winning and she's giving in to it.
    
42. Don't say, "Let me know if there is anything I can do." People rarely feel comfortable saying, "Yes, my laundry." Instead pick something you are willing to do and then ask her permission. Try the coupon in back!
    
43. Ask her to share her testimony at an event.
    
44. Buy a magazine subscription for her on her favorite topic.
    
45. Plant a rosebush to view from a window.
    
46. Understand that you don't need to know all of the details about the illness in order to be helpful.

    He'll share with you what he's comfortable with you knowing.
    
47. Don't ask, "Why can't the doctors help you?" or insinuate that it must be in her head. There are millions of people who are in pain with illnesses that do not have cures.
    
48. Avoid having gifts be "pity gifts." Just say, "I saw these flowers and their cheerfulness reminded me of you."
    
49. Send tapes of church services your friend misses to her with a copy of the bulletin and a note.
    
50. If she doesn't have a cordless phone, get her one. Phone headsets are also nice.

Reinvent Your Dreams

By Joanna Wasmuth Read an article about Joanna that just appeared in the San Diego Union Tribune August 2006. Often when we are sidelined with pain and illness, we stop dreaming - about who we want to become, what we want to do, things we want to experience, how we want to impact the world. This often leads to a profound sense of loss, fear, frustration, and sometimes depression. We can become trapped and immobilized by not only our physical pain, but our emotional distress as well. But your pain doesn't have to stop you from living a fulfilling, exciting life! Your journey with pain is a unique opportunity to slow down, take a look at your life up to this point, and reinvent it. It all starts with reinventing your dreams! Dreams are the fuel that moves you from frustration to fulfillment and satisfaction! I invite you to start reinventing today! Exercise Make a list of dreams and goals you've had in life. Choose two or three that leap out at you. As you do this, you might hear yourself saying things like, 'Yeah right. Not anymore! I hurt too much to do that." If that's true, I think you'll get tremendous value from this exercise. Really think about those dreams. What is it that drew you to them? What's the essence? Is it something that's going to increase your pain? For how long? Will the excitement be worth an increased pain level for a few days? Is there a way you could accomplish the dream without increasing your pain? Example I used to love hiking, until my health problems turned any attempt at a hike into a painful nightmare. So I reinvented that dream - maintaining the essence, but adjusting the method. Now I enjoy the beauty of nature in a way that is conducive to my current health by going for short walks on flat paths in the woods, or sitting on the beach, or riding my bike leisurely through the park. Brainstorm creative ways that you could reinvent the dream so that you experience what you really want in a way that supports your overall health and wellness. Ask for input from friends if you get stuck. Example If you love to snowboard, but are not up to riding, maybe you could go watch a snowboard competition; take a gondola ride to the top of a local ski resort just to be in the midst of the energy (make sure you can also ride back down!); ride for an hour on the bunny hills; look into snowboard adaptations that would enable you to sit while riding; try inner tubing; and much more! Choose one item from your brainstorm list that you will look into in the next 24 hours. Be in motion towards achieving your dreams! You can live a dream come true life. Even if your life is marked by pain! Joanna Wasmuth, founder of Harmony Coaching Group, is a Certified Dream Coach®, speaker and author. She is also the creator of the LifeThr!ve Personal Coaching Series for People with Chronic Pain. Joanna coaches business professionals who want to fast track achieving their dreams in life and work. Her specialty is empowering professionals with chronic pain from injury or illness to make a comeback in life by reinventing and living their dreams. To contact Joanna, visit www.harmonycoaching.com or email thrive@harmonycoaching.com.