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Rare disease moyamoya - treatment and rehabilitation

Rare disease moyamoya - treatment and rehabilitation

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An Urgent Appeal for Support: Ewelina's Fight for Life

My name is Ewelina, and I am 30 years old. I am currently in a life-threatening battle for my health. In 2008, I was diagnosed with moyamoya disease, a rare and progressive condition that causes stenosis and occlusion of the intracranial arteries. In Poland, there are only about 40 clinically confirmed cases of moyamoya. 

What is moyamoya disease? It is a progressive narrowing of the arteries in the brain, leading to life-threatening ischemic strokes. In 2016, I underwent two EDAS brain bypass surgeries to increase blood flow to my brain. However, there is still no known cure for this disease. 

My condition has been worsening since 2021. A series of recent tests revealed further complications. I now require multi-specialist treatment, including neurological, pulmonological, cardiological, hematological, rheumatological, orthopedic, and gastroenterological care.

Rheumatological tests revealed spondyloarthropathy. I have advanced changes in my sacroiliac joints, extensive inflammation, bone marrow edema, reduced chest expansion, and inflammatory nodules in my lungs. I am currently undergoing intensive anti-inflammatory and pain management therapy. 

I am also undergoing orthopedic treatment. In June 2022, I underwent an arthroscopy of my left hip, which unfortunately was unsuccessful. I continue to experience pain and limited mobility. In January 2023, my doctor decided that I need a total hip replacement.

Rheumatological tests also detected celiac disease. I am now on a strict gluten free diet. Recent pulmonological tests also revealed bronchial asthma.

I require further diagnostics, treatment, and continuous rehabilitation. I currently receive a disability pension of 1445.48 PLN, which is not enough to cover the costs of my medical care. I have two daughters, aged 10 and 5, for whom I must fight.

Without the support of kind people, I will not be able to raise the necessary funds to continue my treatment and rehabilitation. The costs of travel to specialists, rehabilitation, and tests are enormous. I want to live and maintain my mobility for my family.

From the bottom of my heart, I thank everyone who supports me in my fight.

How You Can Help:

  • Donate any amount you can to help in covering my medical expenses.
  • Share this appeal with your friends and family on social media. 
  • Spread the word about moyamoya disease and the need for more research and funding. 

Thank you for your compassion and support.

Ewelina


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