I am trying to raise funds to cover DNA medical tests that my insurance will not pay for. I have a very rare medical myopathy. I also need help covering hyperbaric oxygen therapy which also is not covered.
I am trying to raise funds to pay for a genetic blood test by GeneDX that costs $10K. Insurance will not pay for this. I have been sick for about 10 years but went undiagnosed until June 2019 when I was hospitalized for rhabdo. I have had a muscle biopsy which showed some information but did not show the full amount needed to make a full diagnosis to know the exact name of the metabolic myopathy I have. I am on disability. Because my condition is extremely rare there isn't much research and there are literally zero approved treatments. I have tried HBOT hyperbaric oxygen therapy with some good results for my breathing which has begun to be affected by the metabolic myopathy. It has also helped the stiffness the disease brings on. It is very expensive and needs to be ongoing. Each daily treatment at a discounted rate is $200. So my goal is to raise $25K to cover the blood work and the treatments to try to help myself. I would like to use some funds to pay to see an expert at NIH and I'm trying to get a connection to be seen at this time.
It's very frustrating and exhausting living with this rare disease. The medical system is not easy and insurance isn't the way most think and won't cover many items I need. I will post receipts for the tests and treatments as I am able to come up with the full payments. GeneDX will not carry out the test without payment in full.
My daily life is very hard. During the height of covid I could not shop for myself because my muscles are too weak to stand on lines very long. I must be very careful about pushing or pulling anything with weight as it will start a chemical reaction in my body causing swelling and breathing issues and can cause rhabdo. I have had one additional rhabdo attack since June 2019. I did not go to the hospital because it was during covid in NY. My doctors advised me to drink a lot of fluids and not move too much and try to flush the toxins out of me alone. Which I did.
I'm almost housebound because I must do so little. But I try to get out a few days a week for a short period of time outside of going to treatments. My life is simple now. It's uncomfortable daily. And I pray for some medical researcher to figure out the cause and a treatment.
I will upload photos soon. I have a pledge from one friend of $1000 so far. Any donations will be greatly appreciated.
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