Rachel EDS Fund for Baltimore

I was diagnosed with EDS-3 at 19. I have had 3 right knee surgeries, 1 left knee, 3 left shoulder & a low back surgery at L4/5. I average about 1 surgery a year. This last year, my EDS has taken off & taken control of my life. I was diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) in early 2014. I feel faint all the time. My vision blacks out every time I stand up & I sometimes need to hold onto some thing or go to the floor to avoid passing out. This has effected my life drastically. I stay in bed for 75% of my days to avoid having my blood pressure spike up to 150/128. My resting heart rate stays pretty consistent at 105. This makes it nearly impossible to get any good rest of sleep. In September, I began getting hives. It started with just a couple that would go away with benadryl.  After a month, all bets were off. The hives consumed my body. They wouldn't go away with antihistamines - benadryl & zyrtec at first - & the allergist/immunologist that I saw was unable to diagnose them. I am on 5 medications to keep me from having hives over every inch of my body... every single day & night.

It is draining not knowing what is wrong. It is exhausting jumping through hoops with doctors that are dealing with an under research, under funded disorder like EDS-3. I've exhausted all possible options with every single specialist I've seen. I need a 2nd spine surgery, but the surgeons here haven't operated on someone so young (I'm 25) with a disorder like EDS-3. Surgeries on EDS patients are notorious for not holding... they have admitted they flat out do not know how to treat me. I have been approved to go to the world's first & only EDS Clinic in Baltimore to be seen by the best of the best. The visit to see doctors is anticipated to be 3-5 days... not so bad! Now, for the blow to the chest, there is a clinical trial for patients with EDS-3 & POTS. The problem is, I live in Wisconsin. The study is in Baltimore & requires frequent doctor visits, therapies, treatments & various appointments. I have made the decision to move to Baltimore for the duration of this clinical trial. My symptoms are bad enough that I'm willing (more like forced by my poor health) to uproot from Wisconsin where I have always lived to do what is needed for my health. This requires me to leave my parents (who are my amazing care takers), my dog, Raja, my siblings & their families & the one I'm dreading most....... leaving my 13 month old nephew/God son who I am beyond obsessed with. I see him 4 times a week at least. I can't imagine not watching him learn & grow. The thought of leaving my dog is terrifying, too. My poor dog will not understand why I have to leave. I anticipate being gone for 12 months. Ah... terrifying. However, this is what I need to do for my health.

I am taking donations to help offset costs of travel & lodging for my initial appointment. My initial appointment has been approved by insurance, but further appointments, treatments or potential surgeries are not guaranteed to be approved since they would ideally like treatments to be carried out in WI, where it will cost them less. For the clinical trial, I will need permanent housing, depending on how long they'd like me to stay, minimum of 9 months. This EDS clinic in Baltimore is where I need to be.

I'm 25 years old. I am living with my parents out of necessity. I coach a Varsity dance team (1st place at Nationals last year in hip hop!!!) & own my own business, also out of necessity. I can't do an 8-5 job. I make my own hours, work when I'm able & take care of myself when needed. I am on disability... at 25. Disability. No one dreams up this picture of life when they dream about what life after college is going to be. I have had a handicapped parking pass since I was a senior in high school. The judgement I get for having to park in handicap is so disheartening. EDS is a silent (hidden) disorder, so I look fine, but feel terrible... I get yelled at by people from their cars, people wait to confront me as I get out of my car & have even had notes left on my windshield saying "this is what is wrong with today's youth - the laziness is beyond disgusting." In reality, I have joints that dislocate without cause or warning & my heart problems from POTS makes me tire very easily. I have to park close for health reasons that are invisible. The judgement, even from friends & people I know, has lead me to seclude myself. There is far less judgment or negativity that happens when I'm by myself. I used to teach dance for ages 3 to 15. After my 1st shoulder surgery, 4 years ago, I was forced to stop teaching. Dance was my world. Hip hop was my life. Being pulled away unwillingly was & continues to be an extremely sad decision I had to make. Sad decisions... necessary decisions - there appear to be a lot of those these days. Chronic & acute pain come with extreme anxiety & depression.

I continue to have faith in God. I continue to believe He chose me to have these health issues for a reason & am patiently awaiting the reason to come to light. I know God will provide me with the strength, resources & courage to make a big, life changing move from Wisconsin to Baltimore. <3

Please feel free to 'like' my Facebook account for this medical trust fund to follow me on this journey from Wisconsin to Baltimore. The account is "Rachel Rykal EDS Fund" on Facebook. God bless! :-)