Jake's treatment for Ehlers Danlos Syndrome

This GoFundMe is set up to help cover medical and travel expenses for my stepson Jake, who is 24 years old. Jake was diagnosed with Ehlers-Danlos Syndrome (EDS). Ehlers Danlos Syndrome is a complex connective tissue disorder that is inherited genetically from parents. It can affect one or more joints throughout the body, and there are several types of EDS. Jake has hypermobile EDS, Skin Hyperextensibility EDS and Tissue Fragility EDS. Hypermobile joints are loose, as the collagen is not strong enough to support the joints, and it is very painful. Skin hyperextensibility means that the skin can be stretched beyond the normal range. Tissue fragility means that the body’s organs and other structures are more vulnerable to damage. Tissue fragility can present as easy bruising and poor wound healing in many types of EDS. Some types of EDS can also cause severe fragility of the skin, blood vessels, abdominal organs, eyes, gums, and bones. There is no cure, only management through extensive physical therapy. He is allergic to opiates and he can only take ibuprofen and CBD for the pain. This is also compounded because he has chronic asthma.

The diagnosis is bittersweet. Sad to find out he has this, but now at least there is a name for the health issues he has been experiencing most of his life. He has not been able to work much for the past 2 years and his mom has been covering his living expenses. He did not qualify for disability because there was no specific diagnosis.

I am raising funds on his behalf because he has to see a geneticist on the other side of the state, which is going to have a large co-pay and many physical therapy appointments that will exceed the number of covered visits.

Jake is a great cook and has always wanted to attend culinary school but it's hard for him because he can't stand for extended periods of time. He was a loader with the local stagehands union and can't work anymore.

The good news is that after seeing the geneticist, he will be qualified for disability and Medicaid which could take up to 90 days to get.

Thank you.

CJ