Please help me find someone else with my rare conditon
My name is Valerie, I’m a teenager, and I’m chronically ill.
I’ve been sick for a decade now, and unfortunately, I tend to get all the rare and ~special~ disorders. Because of this, I currently have doctors in nine cities spanning across five states. I battle six chronic conditions, and balancing them is a daily struggle, but I’ve managed.
But my newest condition has turned my life upside down. It’s called Recurrent Subacute Thyroiditis (RSAT) and most doctors will never see a case of this in their lifetime. I luckily have found a doctor who has least seen a few cases of this before, but I am the youngest person she has ever seen with this condition.
RSAT is an inflammation of the thyroid that causes overactivity, leading to high heart rates, trouble breathing, low blood pressure, dizziness, chest pains, insomnia, fatigue, hair loss, and muscle weakness. The overactivity lasts for about 2-3 months, and then the thyroid flips to inactivity, leading to lethargy, extreme fatigue, depression, low body temperature, and slow heart rates. The inactivity lasts for 2-3 months, making this a 4-6 month condition. I’m currently in the middle of my second episode, and my first episode was just two years ago.
I am terrified. This condition has caused me to be rushed to the ER twice. This condition has rendered me so dizzy and dropped my blood pressure so low that walking is a hazard and I am in a wheelchair. This condition has prevented me from attending school since the end of October. This condition can occur again, and there is no telling when or how often.
I’ve scoured the web, posted in countless Facebook groups, analyzed research, and even scheduled a conference call with doctors in another country to try to get some answers. Not only is there no information on it, but I can’t find anyone else with it (and due to HIPPA laws, my doctor is not allowed to connect me with the other cases she has seen). I have support from my friends and family, but they cannot even begin to understand what this is like.
I am alone in this right now, but I know the internet is a powerful place. I’ve seen other kids with rare conditions find support and/or answers, and I thought I might as well give it a shot. Please, please - even if you don’t have this condition, even if you don’t know me, please reblog this and spread this around. I just need to know that I’m not alone in this. Even finding one person who has this would make the world of a difference.
Thank you in advance. Those who know me best know I absolutely hate asking for help, but I can’t do this alone anymore.