Help with Diagnosis Ehlers-Danlos-Syndrome
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Hello, I am Veronica, 35 years old, and I am collecting donations to help me get through the difficult next few months and years. Already I had to give up my regular job for now due to my illness and need to redirect my career. At this moment I see no other option but to ask for help.
After almost 8 years of odyssey, after a long struggle, several hospitalizations and visits to ER, etc., I received a serious diagnosis: Ehlers Danlos Syndrome. A rare disease with no cure - a connective tissue disorder which also brings several other illnesses and leads to chronic illnesses. Before my illness I was in good health, I did a lot of sports, participated in marathons, was climbing & went on bike tours, traveled a lot around the world, always loved to travel and go on adventures.
Without any accident or injury, I went from being a healthy athlete to being completely immobile and a pain patient. All those years with no medical explanation, no diagnosis, wrong treatments until a few weeks ago I finally and luckily got an answer from a genetic specialist.
There is no goal-oriented help from the regular health insurance, which means that I have to organize and pay for all therapy approaches privately, which was more than 15.000€ in the past 4 years.
It is very complex and without special help I can neither organize my daily life nor do my job normally. Despite all efforts, it is simply no longer possible and remains a daily struggle for which I unfortunately have not many reserves of strength.
I still don't want to give up hope and try to make the best out of every day despite all the hurdles and enormous pain and danger.
I have already applied for a care degree and a disability certificate.
Sooner or later I will have to rely on a wheelchair - for which I need to save up money starting now and which will enable to live life more fully. I already need joint supports for all joints, bandages, ultra-sensitive plasters, special insoles and shoes, support when driving, support in the kitchen and in the bathroom. Neither long standing, sitting or lying down is possible anymore, all leisure activities and sports are also no longer possible as I knew it as an athlete and nature lover.
The load limit for physical as well as cognitive workload is very low and hardly available which all reasons in the connective tissue disorder and further illnesses that come with it.
In the last years I had to invest a lot from private income, using savings for several sessions per week in long-term physiotherapy, medical massages, alternative medicine such as acupuncture, occupational therapy, medication, special swimming courses, pelvic floor therapy regular check-ups, visits / trips to specialists for eyes, teeth, bones, vessels and the cardiovascular system throughout the country where a lot of support and time is needed. I also have to make use of psychotherapeutic help that accompanies the illness.
Also is it necessary to continue and finance the treatment with IV fluids on a monthly basis as often as possible (6 sessions/ 1-2 time per week are about 480€) to support the body to flare up less often.
Also to prevent POTS, orthostatic hypotension, Vascular Issues as Pelvic Congestion Syndrome, Vascular Compressions (Nutcracker, May Thurner, Thoratic Outlet, Popliteal, Entrapment, MALS, SMAS, etc.), Chronic Venous Insufficiency, Valve Prolaps, Aneurysms, Interstitial Cystisis. Soon there is surgery planned at an oral surgeon on part of the jawbone (3600€), which would be the third of that kind in four years.
Somehow getting by in everyday life while trying to alleviate the daily pain and remain mobile, not giving up, knowing not to be alone, findig further specialists - that is the goal, so that life is a little more worth living and enjoyable again.
Just keep going somehow and trying to find a way through. That is the biggest hope. Also to spread awareness for this rare disease that affects humans - starting mostly this age- around the world for the rest of their lives.
I am grateful for any kind of support from the bottom of my heart. Thank you!
“Being chronically ill is learning to accept your body right now while grieving the body you once had.”
Organizer
Veronica N
Organizer
