Anne's Scleroderma Medical Fund
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My name is Annelisa, I am 30 years old and was born in Venezuela. When I was three years old I started dancing flamenco. That along with horses are my two passions in life, for that reason I went to Vetenary School and also I am a Flamenco professor. A few months ago I started to notice a change in my body, specially my hands and feet. I have lost most of their ability to move. After various tests and exams I was diagnosed with Scleroderma, Lupus and Raynaud's Syndrome.
Scleroderma is called both a rheumatic disease and a connective tissue disease. The term rheumatic disease refers to a group of conditions characterized by inflammation or pain in the muscles, joints, or fibrous tissue. A connective tissue disease is one that affects tissues such as skin, tendons, and cartilage. In scleroderma, four pathologic processes are present: inflammation, cross-linking of collagen leading to tight skin, fibrosis or scarring of tissues, and vascular endothelial changes leading to lack of oxygen to the hands and feet. Lupus is primarily an inflammatory process. Lupus and scleroderma can "cross-over” or have overlapping symptoms and signs.
A patient may have a mixed connective tissue disease, especially if puffy hands and Raynaud’s are present. During an attack of Raynaud's, affected areas of your skin usually first turn white. Then, the affected areas often turn blue and feel cold and numb. As you warm and circulation improves, the affected areas may turn red, throb, tingle or swell. The order of the color changes isn't the same for everyone, and not everyone experiences all three colors. Although Raynaud's most commonly affects your fingers and toes, the condition can also affect other areas of your body, such as your nose, lips, ears and even nipples. After warming, it may take 15 minutes for normal blood flow to return to the area.
The doctors have begun to prescribe me an immediate treatment to stop the disease so it doesn't start affecting my vital organs. This is a medication called Rituximab 1000mg, which costs $15,000 and should be applied every four months during the first two years of treatment. This coupled with a series of daily medications, and tests required prior to application of each infusion; implying a cost of approximately $200,000 during the first two years.
I feel blessed to have a loving and supportive family, but they cannot do this alone; in the first two weeks of treatment we have already spent more than $30,000. For that reason I need your help. I want to be the same as before, I want to be able to dance again, teach flamenco, and heal animals; I want to live a normal life. Please help me.
Thank you very much
God bless you!
Gracias a Dios por ponerlos a todos en mi camino.
Scleroderma is called both a rheumatic disease and a connective tissue disease. The term rheumatic disease refers to a group of conditions characterized by inflammation or pain in the muscles, joints, or fibrous tissue. A connective tissue disease is one that affects tissues such as skin, tendons, and cartilage. In scleroderma, four pathologic processes are present: inflammation, cross-linking of collagen leading to tight skin, fibrosis or scarring of tissues, and vascular endothelial changes leading to lack of oxygen to the hands and feet. Lupus is primarily an inflammatory process. Lupus and scleroderma can "cross-over” or have overlapping symptoms and signs.
A patient may have a mixed connective tissue disease, especially if puffy hands and Raynaud’s are present. During an attack of Raynaud's, affected areas of your skin usually first turn white. Then, the affected areas often turn blue and feel cold and numb. As you warm and circulation improves, the affected areas may turn red, throb, tingle or swell. The order of the color changes isn't the same for everyone, and not everyone experiences all three colors. Although Raynaud's most commonly affects your fingers and toes, the condition can also affect other areas of your body, such as your nose, lips, ears and even nipples. After warming, it may take 15 minutes for normal blood flow to return to the area.
The doctors have begun to prescribe me an immediate treatment to stop the disease so it doesn't start affecting my vital organs. This is a medication called Rituximab 1000mg, which costs $15,000 and should be applied every four months during the first two years of treatment. This coupled with a series of daily medications, and tests required prior to application of each infusion; implying a cost of approximately $200,000 during the first two years.
I feel blessed to have a loving and supportive family, but they cannot do this alone; in the first two weeks of treatment we have already spent more than $30,000. For that reason I need your help. I want to be the same as before, I want to be able to dance again, teach flamenco, and heal animals; I want to live a normal life. Please help me.
Thank you very much
God bless you!
Gracias a Dios por ponerlos a todos en mi camino.
Organizer
Annelisa Rodriguez
Organizer
Austin, TX