Support #myEDSchallenge to walk by the end of May!

1. I have joined the May Awareness Month Challenge to spread awareness and raise funds to support The Ehlers-Danlos Society by participating in the #myEDSchallenge to walk by the end of may! Please support me by donating to my fundraising page. Together, even a small amount can make a huge difference!

Currently I am working on trying to bend my knee and ankle and stand with my Walker out of my wheelchair. #myEDSchallenge that I am going to work with my therapist on, is to walk by the end of may! I know I can do it with your help!

I was originally diagnosed over 4 years ago with Hypermobile Ehlers-Danlos Syndrome (hEDS) by a medical professional who decided I was not worth their time. I was not informed, not treated, not directed to any other medical professionals for further help with my comorbidities and other related symptoms. I was walking about the unknown, continuing to fail, continuing to fall...all on my own with no help, no idea what I was supposed to do or if I was supposed to even do anything at all in the first place. So I continued on about my life as it was. Constant GI problems, constant dislocations, bruising, ER visits, infections, allergic reactions, random rash or hive breakouts and flair ups, severe daily pain and migraines, surgery after surgery wondering why my body was falling apart or if I was crazy. I have to appreciate my primary care physician for not giving up on me and always taking care of me despite the numerous visits in a single week. I would've thought they'd give up on me too, but not all physicians are the same. Some are super heroes. Here is where my story changes. Second opinion.

I received a referral for a new specialist and my life at this point began to change. Diagnosed again with Hypermobile Ehlers-Danlos Syndrome (hEDS) as well as again Lupus and some other comorbidities. "Okay, so wait a moment", I thought, "I do actually have some sort of autoimmune disease and I have had it this whole time?" This medical professional immediately took the time to explain EVERYTHING. I received pamphlets, articles, he directed me to The Ehlers-Danlos Society website, mentioned finding and joining support groups online for more info, support and so on. I was put on medication to help with some of my symptoms which has helped quite a bit. I received referrals immediately out to other specialists to get help for my other comorbidities and symptoms so that I could begin living my life better. The goal is to have a better quality of life! This specialist was willing to help me achieve that!

Since then I have had my ups and my downs with physicians. I have moved states and there are always struggles with finding the right physicians. Even if a physician does not understand or know anything about Ehlers-Danlos Syndromes, are they willing to do the research? That is what matters. Awareness. Those that are willing take a moment to understand, to become aware by just reading one small article or listening to a friend or person diagnosed with EDS and then passing that information onto another. Knowing about the Ehlers-Danlos Syndromes can help bring support to not just those diagnosed with EDS but also to their families and caregivers. Correct diagnosis and knowing sooner than later can help prevent (not all but a little) stress on families, friends and the one diagnosed, financial distress, and even death. Awareness is key. If I had known sooner a lot would have been different for me in many ways and all because even I was unaware.

I hope to help others become more aware and offer support in return to those that have offered me support. Thank you for your support!

The Ehlers-Danlos syndromes (EDS) are a group of heritable connective tissue disorders that produce a spectrum of complex problems across multiple systems of the body. Symptoms that are often seen across all types are hypermobile joints, (that can move farther than normal), stretchy skin, & fragile tissues. Each case is unique and severity may range dramatically, even within families.

The Ehlers-Danlos Society is a global community dedicated to saving & improving the lives of those affected by the Ehlers-Danlos syndromes, hypermobility spectrum disorders, & related conditions. Our goal is world-wide awareness and better quality of life for all who suffer from these conditions, regardless of geography.

Please support me as I overcome my challenges with EDS to participate in the #myEDSchallenge walk by the end of may! by donating. Thank you! Follow my progress on Instagram @zebraJemma