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Renee's Ride to Better Health

Organized by: Renee Rothberg

Renee's Photo

THE STORY:

Ehlers Danlos Syndrome is a heterogeneous group of heritable connective tissue disorders, characterized by articular (joint) hypermobility, skin extensibility and tissue fragility. There are six major types of EDS. The different types of EDS are classified according to their manifestations of signs and symptoms. Individuals with Ehlers-Danlos syndromes (EDS) have a genetic defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in patients with EDS are the result of faulty or reduced amounts of collagen. Collagen is a protein, which acts as a "glue" in the body, adding strength and elasticity to connective tissue. [http://ednf.org/what-eds]

There is no cure, no single medication, nor a standard medical treatment for any of the types of EDS. There aren't even any clinical trials currently active in the United States database. The myriad of symptoms that erupt from faulty collagen throughout the entire body are treated individually, generally by separate specialist providers.

I was formally diagnosed with Ehlers Danlos Syndrome in January 2014 by a geneticist in Oakland, CA. I have the Hypermobile type, also known as Type III. Currently, there is no gene test for this type, diagnosis is made by thorough medical history and clinical examination. I was first diagnosed with Hypermobile Joint Syndrome by a rheumatologist in Poughkeepsie, NY (whose care I had been under for another chronic health issue) in 2011. At the time, I did not have adequate health coverage to pursue a more accurate diagnosis. I was also struggling to find a treatment that could manage my aggressive Rheumatoid Arthritis that had gone undiagnosed for years. The symptoms of both the RA and what I did not yet know was EDS had me essentially bed-bound for most of my days. Then, in a giant leap of faith, my fiance and I relocated to the North Bay Area, CA, in hopes of improving my health.

Since arriving in November, 2013, I have made great strides in improving my overall health. I am extremely grateful for my wonderful team of providers at Kaiser Permanente. The warm, dry, snow-free climate has helped my arthritic joints become much happier. I've made some drastic dietary changes, and as of April, my RA was considered to be bordering on remission, which meant I could start backing off of the low-grade chemo medication used to treat it. The geneticist recommended books to me, which I have read and followed the advice written within them, and most recently, I have completed an 8-week pain management course teaching mind-body methods to help cope with chronic pain. I am no longer bed-bound for most of my days, but if I want the quality of my life to continue to improve, I must find a way to exercise more regularly. I have tried water aerobics and walking, as well as some exercise DVDs. My doctors and I both agree, biking would be perfect.

As anyone with any kind of chronic illness will tell you, being sick is expensive. I consider myself quite lucky, in the sense that I have great health insurance. Before I became too sick to finish my college education or continue working, I had accrued a decent number of work credits for a 23-year old. Now, at 28, I receive Social Security Disability, which makes me eligible for Medicare, and in California, also Medi-Cal. However, what I receive in SSDI still places me at the Federal Poverty Level. I am only eligible for $15 a month in SNAP benefits (food stamps). After paying rent, buying the vitamins that are recommended (2 I am clinically deficient in but insurance doesn't cover, 4 are recommended specifically for my condition), items to help stabilize my joints (KT Tape, even at the $16.97/roll Wal-Mart price isn't cheap when you're taping both knees and occasionally both elbows to keep them in place), and personal care items, there isn't much money left to spend on large investments like a quality bike. Exercising will reduce the fatigue I experience, as well as strengthen my muscles and bones - which is the only way to prevent further damage. My goal is to first reach a healthy activity level, and then push forward to start doing 5K rides and such to raise awareness for my conditions, and most importantly, let others know that there is more to life!

I have countless goals and dreams, and my health conditions won't hold me back from reaching them. So please, donate whatever you can to help me get my bike and the necessary gear to make it safe and comfortable for me!

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Renee Rothberg

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