Support Crystal Medical Expenses

Hi, my name is Crystal and my daughter is helping me with this fundraiser. I have a form of Marfan Syndrome. It’s a life-threatening genetic disease. It causes damage to the blood vessels, heart, organs, eyes, skin, lungs, tendons, ligaments, muscles, hyper mobility which causes dislocation of joints and bones issues.

Marfan syndrome is an inherited disorder that affects connective tissue — the fibers that support and anchor your organs and other structures in your body. It is what holds your body together.

Marfan Syndrome is extremely rare. It has no treatment and no cure.

My Geneticist, Rheumatologist, and Cardiologist are at UT Health in Houston which is five hours from me. Last year my disease flared up and caused numerous muscles to tear, my left Rotator Cuff in my arm to tear and the Peroneal Tendon to tear in both ankles. This is a tendon that can cause your ankles to dislocate when it tears. I have been in braces for over a year now because there is no treatment and Prednisone is not an option because that causes your tendons and ligaments to be weak and that’s a part of this horrific disease. Surgery is not an option due to the weak tendons as well.

So to tell you how it affects me is that my aorta root is dilated and has a small aneurysm (It’s at a 4.2cm surgery is requires around 4.7 cm) I have a hole in my heart that they will not close and that is what caused the stroke, my joints are very lax meaning they move way too much and that’s what causes the dislocation and all the tears of the tendons and ligaments, I have Glaucoma from it, I have Scoliosis from it and numerous other issues. I have fibromyalgia which they do not know if it is connected to the Marfan Syndrome.

I am on here because the medical expenses, travel expenses and personal expenses have been so overwhelming that I am not able to afford them. Any help is greatly appreciated!

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