In April 2023, Tulane Medical School released the news that the genetic marker for hypermobile Ehlers-Danlos Syndrome has been identified. The cause is now known. Which also means the treatment is now known. I didn't stumble across this information until August 2023. I hadn't gone looking for new research into my illness. I hadn't held any hope that there might be a treatment for it in my lifetime. I stumbled upon the article.
I believe in the treatment because I've had a personal experience with a "sister" treatment. In 2008, during my long stint as undiagnosed, I thought I'd figured out that I had a B-12 deficiency. I took methylated B-12 for 14 months. I was WELL for those months. I finished college. I got married. Many, many joyful memories. But, a flare brought everything crashing down and soon I had to drop out of the PhD program and allow for my illness. I was left thinking I must've been wrong about the vitamin after all.
Now, the treatment identified for HEDS is methylated B-9. Which makes so much sense to me. And I have so much gratitude that the answer doesn't need a prior authorization, or an office visit. It's not an experimental drug or an expensive test. It's an over-the-counter, readily-available vitamin. In the research, it is still being labeled as a "possible cause and possible treatment", of course. But, I have memories of how well I was on methylcobalmanim. I know this will help me. How much? Who knows? If it can reduce the number of days I have to have a migraine, I win. If it can reduce some dosages or even some medications altogether, I win. Even if the hope of improvement positively affects my quality of life, I win. I just WIN. And keep winning.
I do have the MTHFR genetic mutation. I have been taking the methylated folate for 9 days now. I've had only 1 migraine in that time, which did respond to meds and only lasted a few hours. I feel WELL. I feel like MYSELF.
I don't have any way of knowing if a flare of symptoms will break through my new-found wellness. It certainly could, at any time. But also, it might not. That right there changes life. It might not. If it does, I'll be able to handle it as I've been living with the disease untreated for 18.5 years. But what if there's not another flare? What if this nutrient does everything it could?? What if?
I have felt zero pain in the 9 days on the vitamin. None. I can think clearly. I can digest food more easily. No anxiety. Just the one migraine that was only a 5 on the scale and lasted only a few hours.
Fellow Zebras, there is no reason not to hope. We're being studied. We're being helped.
Blessings are EVERYWHERE.
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