
Surviving a Rare Auto Immune Disease
Donation protected
UPDATED 1/27/25 below.
If you have clicked on this story, I wanted to start by thanking you for taking the time to read this. I really am embarrassed and terrified to put this out here for the world to see, but I can’t do this alone anymore. I am terrified of asking ANYONE for help, and I always downplay the seriousness of my situation to those I know and love. I don't want to ever have people worry about me or feel they need to help me. I would much rather help others than to burden them with my troubles. So to say this is terrifying for me to do is an understatement.
I was diagnosed with a Rare Autoimmune Disease that affects the skin and muscles. I was originally diagnosed in 2017 with this disease however at that time there was no muscle involvement, just horrific skin issues, and the potential severity of the disease was never explained to me. My disease has now progressed and there is muscle involvement that started on 10/31/23. My own body is attacking and destroying my muscles (mainly in the arms, legs, shoulders, hips and my esophagus. It has also been affecting my heart.) I have been so sick and have been undergoing treatment that almost completely took away my ability to walk or move. My body felt as stable as the head of a bobble head toy. The treatment was stopped and i am slowly gaining mobility back but am very slow and weak. I will start my new course of treatment by IV Infusions beginning 1/12/24 which will also make me sick and suppress my immune system (which is already compromised due to my Type 1 Diabetes). I have been so sick, fatigued and in tremendous pain off and on for the past year, that I have had to close my business and live off of savings. I have now depleted all my savings and am losing everything I have worked so hard for. I will be filing bankruptcy and giving back one of my two vehicles to the loan company. To make things more complicated, I am needing to move into a 1 story home due to my new mobility issues. Climbing the stairs is becoming increasingly difficult My doctor advised me to lay low, relax, no strenuous activity and eliminate stress from my life as stress makes the disease progress and flare up. Needless to say, my treatment will take 6 months to a year to start working. There are many complications that can arise with this condition such as lung disease, heart disease and various cancers. I am going to fight this in hopes that I will be able to get this disease into long term remission or at least controlled by these new treatments. I am currently trying to get into Stanford because I heard they have a great Myositis team there. I am terrified for what my future holds, and for what the future of my kids looks like. I am temporarily unable to support myself or my children at this time until disability kicks in (which could take months to years), and am terrified at the thought of facing homelessness. If you have made it this far, I appreciate you reading. If you are able to keep my kids and I in your prayers, it would mean everything to me. I believe the power of prayer can move mountains, and I have a big mountain to conquer . If you have any questions for me, I am happy to explain in further detail. Feel free to reach out to me. ❤️
Organizer
Paige Moore
Organizer
Concord, CA