The story of Sarah
My name is Sarah, I have Idiopathic Syringomyelia that has created a domino effect of disorders throughout my body over the years. I was told I would be paralyzed by age 25, but luckily,I only had a week scare of that at 26 and am still mobile. One of my syrinxs’ is from T7-T12, while having a central canal high intensity increase at T1/T2, with a tumor at L2 in my spine. This has created nearly 30 different types of disorders from nerve to neurological issues within, but due to the location of my biggest syrinx being behind a central area of nerve roots, I am “untouchable.”I was also diagnosed with hyperparathyroidism about two years ago after thinking my kidneys were the issue for over 10 years, but it was in fact, my parathyroid. (It took years of hospital visits, doctors, and specialist to find a specialist who discovered this, even after my kidney momentarily failed, causing immediate heart failure(at this specific time my heart rate dropped to 14)and put me in critical condition, but luckily I am still here today. My spine and kidney pain, as well as my intense migraines are the worse of it, mainly because I don’t like to be disoriented and I prefer to keep moving and pushing forward as I am very stubborn. I never knew of “rare” disorders until I was diagnosed with the first one, and although it is quite the challenge, knowing there are organizations such as these attempting to help individuals like us, it is comforting. A lot of our disorders are invisible illnesses. Uness a symptom is overwhelming us, you wouldn’t know the internal battles we fight. Yet, we still fight them, knowing scientifically we cannot defeat them. Thankfully we now have rare advocates fighting for us and we don’t have to feel alone. For all those who are suffering and trying to get through life the best you can while fighting your battles, I hope that you find some amount of relief. While there aren’t cures currently, if one is created in the future for any rare condition(s),it will be because us. Our suffering and consistent fight to keep going that raised enough awareness for people not give up on individuals such as ourselves will be what hopefully helps create a cure or treatment to help future individuals. Stay strong, try to keep going, learn to rest when you need to, and don’t give up! You are not alone! Take care Rare Community, you are blessed, even if it seems like you’re not.Its a blessing to know there’s the possibility of a future cure(or at least the effort put into it in order to establish one), even if weren’t not here to experience it. Thank you to all our advocates as well!