- Z
I created this to share that my partner’s rare autoimmune disorder MCTD, is life threatening and is financially crippling.
- Sources from the mayo clinic: “Mixed connective tissue disease (MCTD) has signs and symptoms of a combination of disorders — primarily lupus, scleroderma, and polymyositis. Many people with this uncommon disease also have Sjogren's syndrome. For this reason, mixed connective tissue disease (MCTD) is sometimes called an overlap disease.
- The symptoms of the separate diseases usually don't appear all at once. Instead, they tend to occur over a number of years, which can complicate diagnosis.”
- Early signs and symptoms often involve the hands. Fingers might get puffy, and the fingertips become white and numb, often in response to cold exposure. In later stages, some organs — such as the lungs, heart and kidneys — can be affected.”
- There's no cure for mixed connective tissue disease. Treatment depends on how severe the disease is and the organs involved.”
A rare condition that affects 0.002% , 2 persons per 100k persons per year, usually commonly occurring in women under the age of 50.
10:1 is the ratio of female to male. Lowest ratio is 6:1.
Life expectancy is usually 5 years old. (He’s a warrior at 27)
He has been living with MCTD his entire life but wasn’t diagnosed until 2021. Throughout his life, he experienced being sick at school everyday and having to miss school for weeks at a time with no known reasons as to why. He had countless doctor appointments over the years with complicated misdiagnosis and still to this day, they have small amounts of research on the diseases effects and treatment options.
They started with mis-diagnosing him with celiac and over the years it has turned into significantly more health complications that don’t relate to celic disease at all. In 2017, he had a nearly-fatal experience and almost passed due to his illness and dropped 90 pounds in 8 months. He also has a STRICT paleo and whole-30 diet with groceries costing around $400+ per month as he is limited to what he can consume. He also cannot even consume the proper paleo diet as some foods still affect his health. (No sugar alcohols, no gluten/wheat/oats, no rice, no soy, no dairy, no legumes-peanuts, no beans, no dyes or artificial ingredients, etc).
Currently he is doing better than 2017, but not better than a normal person. He has no treatment as he was recently let go from a job that is now shutting down with no income except from the government and cannot withstand working most jobs, with proof of notice from a doctor stating he’s not released to go back to work until his health is better and stable. Due to his immunocompromised illness and chronic joint pain and flare ups. His disorder also causes him to produce too many white blood cells that attack his own cells , meaning he cannot heal from any diseases properly taking DOUBLE or TRIPLE the time to heal.
We recently attended the ER and we have no insurance to cover these types of future events from happening or any ongoing medicative treatment. We are starting this fund to at least cover a few appointments at the rheumatologist and to get him on a daily immunosuppressant and other medications/treatment. Anything helps, even $1.
This fund-raiser is for Trevor and being hosted by Kat.
- We hope we can do something, If you’re asking why I cannot help, I currently only make enough to support my basic necessities and we do not live in a place of our own because we cannot afford housing even a studio apartment.
Organizer and beneficiary
Trevor Nail
Beneficiary