Two of my sisters and I were born with a rare disease, that being progressive and debilitating. Sadly they both have now passed on. I also have two of my sisters who are still living and are both able-bodied. They are so impressive, incredibly supportive, and both warriors; each in their own right. I am so blessed to have learned from these two, about laughter being the best medicine, about celebrating new life and perseverance over crisis, and most importantly about love and family.
However, I suppose it is by design that it’s not quite the same as it is the lessons of life from a sister with “it”.
“Kelly, the doctor wants me to go on prescription X. Have you been on that? What did it do for you?” I’d ask. She was several years older, so I was able to use her as my medical reference book.
I feel so blessed to live in an era of all answers to any questions right at my fingertips. Believe me, I do not even know the full scope of the World Wide Web. Wait, is it even called that anymore?
Anyway, I try to find organizations, associations, and pages to whom I can relate, some of which I have been comfortable enough to ask extremely specific and detailed questions and for which I had the privilege to share my perspectives. These sites of which I refer, and I very well may relate to, are sometimes made up of just a few people, usually women, with which I try to find ultimate commonality. These pages and forums may often be contrived of others like me others that may already know or have experienced the vast, endless, amounts of valuable words of encouragement, words of advice, and words I have shared.
I would love to help someone else like me. However, now I feel a little lost and more than a little confused.
Let me just say I pride myself on my education and experience, and I hate being made to feel stupid! I have always tried to be the first one with the correct answer. Even in school, I may have been unable to raise the proverbial hand, so I positioned myself right in the front…. sure to be noticed.
So, I was left speechless when I heard my neurologist say that SMA was not MD. My mind was racing. I could not wait to get to Google! This is what I found.
“While spinal muscular atrophy sounds like muscular dystrophy, it is actually a genetic disorder with symptoms that have some similarities to muscular dystrophy. - verywellhealth.com
Even reading this just now, I had to read it again, so I am included with many others as having spinal muscular atrophy. Even more specifically, I am diagnosed as having SMA Type 2.
Could I truly have been mistaken all these years? Is it in fact two different disorders? I was certain SMA was a rare disease in and of itself, but under the umbrella of that which is muscular dystrophy.
Allow me to use this as an invitation for discussion amongst those who might be able to set me straight. Please understand, I know the definitional difference between muscular dystrophy and muscular atrophy. I struggle clarification about SMA not being MD. I imagine either definition is my diagnosis. I am certain I can identify with, relate to, and will still be welcomed by many of the groups I mentioned.
Afterall people are people, and we are all God's people.