Life with MS & EDS

March 22, 2010

Health Care Reform Bill Passes

While I don’t think the health care reform bill goes quite far enough or accomplishes as much as it should, I am very thankful for its passage.  As a parent of a child with a diagnosed life-long disease, I no longer have to worry that she won’t get medical coverage or that we made any wrong decisions while trying to figure out what was wrong with her.

We first knew something was wrong with Little Sister when she was 9 months old.  She wasn’t rolling, wouldn’t lay on her stomach, and couldn’t sit up, among other things.  We started with physical and occupational therapy and began down the path to determine what was causing her delay.  We went to a pediatric neurologist.  We ruled out Cerebral Palsy and Spina Bifida with an MRI when she was one year old, but ruling things out didn’t bring us closer to knowing what was wrong.

We moved around the time she was two.  The old neuro told us to ask the new doctor for genetic testing.  Great, sounds simple enough, right?  Take some blood and know if one of hundreds of things were wrong.  It’s not so great actually.  As parents we wanted to know what was wrong with her, but knew that the answer could prevent her from ever getting health care coverage or life insurance in the future.  Thankfully, as a government employee, I knew we would not get dropped immediately, but what if I ever lost my job and needed to qualify for other health insurance?  It was a difficult decision.

We decided that knowing what was wrong outweighed the potential risk, so we went forward with the karyotype.  It turns out that the test didn’t show anything wrong.  We were offered the opportunity to do more extensive genetics testing, but decided against it.  Part of me didn’t want to know if she was susceptible to specific diseases or illnesses, but a bigger fear came down to future medical and life insurance considerations.  Not only did I not want to know if she had a gene that could lead to something down the line that we hadn’t even considered, I didn’t want anyone else to ever use that information against her.

One of the last conversations I had with our friend before she died from breast cancer was about genetic testing.  She was dying from a rare and aggressive form of genetic breast cancer.  She had two little girls.  She talked about not wanting them to have the test to determine if they had that potentially deadly gene.  We talked about fear of our girls not having health care coverage when they needed it most.  Trust me, it’s a really hard decision to make.  Knowing that you have something that could potentially be treated before it can do damage meant that insurance companies would also know and decide you were too much of a risk to take on.

With this health care reform legislation, I no longer have to worry about Little Sister obtaining medical insurance.  It’s okay that her medical records indicate she has Ehlers-Danlos Syndrome.  EDS is a very treatable disease and generally not life-threatening, but it’s still a pre-existing condition.  We need to monitor her heart, getting electrocardiograms every 3 years and yearly during puberty.  We have expenses for DAFOs (ankle-foot orthotics.)  We had expenses for therapy, but now the school system provides it (this could change.)  In general, it’s not an expensive disease.  I cannot imagine what parents of kids with costly and life-threatening diseases go through.

Compared with EDS, my MS is a very expensive disease.  Between brain and spine MRIs every 6 months (these will eventually be further apart), disease modifying drugs, and three neurology visits a year (sometimes more), I cost insurance companies quite a bit of money.  I hope that our Senators, Congressmen, and President continue to press of even more improvements to health care.  No adult should be penalized for pre-existing conditions and risk losing their insurance when they need it most.  Everyone deserves access to high-quality medical care, without it bankrupting them.

December 13, 2008

What a Difference a Year Makes

Filed under: Uncategorized — by mseds @ 8:00 am
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A year ago today we were with Little Sister in the emergency room. She had her tonsils and adenoids taken out a week and a half earlier. The first day or two after surgery went well. Other than refusing ice cream in favor of dry, crunchy things like crackers and granola bars (texture issues are a common difficulty with kids with hypotonia), refusing to drink, and having to wake her every 4 hours for pain medicine, things were going pretty well. Then the areas started to scab and it was all down hill from there. Each day she ate less and less and eventually she wouldn’t eat at all. I offered her ice cream or milkshakes breakfast, lunch, and dinner, but she flat out refused. At this point I questioned if she was really my kid! We tried yogurt (typically a favorite food), but she refused. We tried everything we could think of, but she refused everything and was barely drinking.

I suppose it shouldn’t have been a surprise that when I called the doctor they said to get to an emergency room to get her re-hydrated. We tried to get down to CHOP where the surgery was done, but ice was falling from the sky, so we went to a local emergency room instead. Thankfully they were pretty good with her. Little Sister got much better after getting the IV and a stronger pain medicine. After that we were able to cut back on the prescription pain meds and she also started eating more. The next day she drank a whole 9 oz. and yes, that was considered fantastic progress. Talk about a rough few weeks.

Her surgery was on the first night of Chanukah last year. It was a pretty rotten Chanukah. Not even presents every night could cheer her up. Thankfully she was much better by Christmas. (We’re an interfaith family, so we celebrate both.) Although it was a very rough few weeks, I’m very thankful that we did the surgery. She has been so much healthier since then. She no longer gets 105 degree fevers every six weeks. We made it through a whole year without going to an emergency care center! She gets over colds much more quickly. She finally started eating more (she didn’t eat much before the surgery, so I suppose we shouldn’t have been caught off guard when she wouldn’t eat during recovery.) She completely stopped drooling. We finally have pictures of her with a dry chin! Not only that, but her speech improved dramatically over the next few months.

Thinking back to that day reminded me that CHOP is doing a genetic study of approximately 100k patients over 3 years, along with some of their parents. They hope to compare the genetic markers of children to see if they can isolate root genes for certain symptoms and disorders. At the time Little Sister was still undiagnosed. She obviously had hypotonia, but we didn’t know what was causing it. So, I volunteered myself and my husband to participate. While Little Sister was waking up from surgery, a nurse took a teaspoon worth of blood with a tiny needle. She had just had things removed from her body, so I didn’t think anything of giving that little blood. Now that she has the EDS diagnosis, hopefully this information has made it back to their study. Now I need to figure out how to let them know about my MS diagnosis, although I’m not sure they’ll track this since it tends to affect people outside of their target age bracket.

I hope things are going well with their study and that they are making some progress in identifying genetic links. There’s so much promise in genetic research, but I am concerned that healthcare policy and big business are going to slow down progress. When we were trying to diagnose Little Sister, we agreed to a Karyotype, which studies the chromosomes and can help in diagnosing or ruling out many disorders and syndromes. Her Karyotype didn’t show anything, but that just means it ruled out things the medical community has already traced to a gene and figured out how to test for. We were offered the opportunity for a full genetic mapping, but declined. We were concerned that the information it would reveal could some day lead her to being denied health or life insurance. Our country’s laws have not been keeping pace with medical innovations and advancements and that causes great concern. I hope that some day solid rules barring genetic discrimination will be the law of the land, but in the meantime, businesses don’t have to insure people they know will cost them lots of money. Preexisting conditions make it extremely difficult to change jobs or insurance plans or even obtain decent coverage. I’m extremely fortunate that I don’t need to worry about that as long as I keep my current job, but it angers me that this is a major issue for so many Americans.

This post started as a reflection of how well Little Sister is doing and morphed into expressing distain for medical policies in our country. Sorry about that. It’s frustrating to be living in a time where there are so many medical possibilities that are being constrained by antiquated and unenlightened legislative policies. I have high hopes that things will change over the next four years, not just for the promises it could bring Little Sister or me, but for the millions of people struggling with or dying from diseases we should be working to prevent.

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