LET'S RAISE AWARENESS FOR FABRY DISEASE 

Hello Everyone,

There are many of you that does not know that Trevor and I have Fabry Disease. 

What is Fabry disease?

Fabry disease is a rare genetic disorder caused by a defective gene (GLA) in the body. In most cases, the defect in the gene causes a deficient quantity of the enzyme alpha-galactosidase A. This enzyme is necessary for the daily breakdown (metabolism) of a lipid (fatty substance) in the body called globotriaosylceramide or GL-3. When proper metabolism of this lipid does not occur, GL-3 accumulates in the majority of cells throughout the body. The resulting progressive lipid accumulation leads to cell damage. The cell damage causes a wide range of mild to severe symptoms including potentially life-threatening impacts such as kidney failure, heart attacks and strokes. Fabry disease is described as a progressive, destructive and potentially life-threatening disease. Fabry disease can affect males and females of all ethnic and cultural backgrounds.

A few of the many common symptoms of Fabry disease include:

--Numbness, tingling, burning or other abnormal sensations especially in the hands and feet

- -Pain attacks/crises: pain attacks which can last from short to very long durations and can be mild to disabling. These attacks may be accompanied by body aches, fever, and fatigue.

--Frequent overall body ache or discomfort
--Intolerance to physical activity
--Frequent and/or chronic fatigue
--Hot and cold temperature intolerance
--Reduced or absent sweating often resulting in overheating with exertion
--Gastrointestinal issues - frequent mild to severe diarrhea, flatulence, bloating, stomach or intestinal pain and cramping

--Ringing in the ears, and progressive or sudden hearing loss
--Weakness, lightheadedness, dizziness, vertigo (spinning dizziness) and headaches from neurological damage, and other cerebrovascular disease impacts
--Peripheral neuropathy (damage to the peripheral nervous system) which causes or exacerbates many other Fabry disease symptoms
--Transient Ischemic Attacks (TIAs), usually referred to as mini-strokes, that are usually short in duration
--Strokes (often at an abnormally early age)
--Impaired kidney function and kidney failure usually without diabetes
Kidney Dialysis and Transplant
--Heart complications such as arrhythmias (generally abnormalities in the heart's rate or rhythm including atrial fibrillation); left ventricular hypertrophy (LVH)/enlarged heart often without high blood pressure; and malfunctioning heart valves
--Heart attacks and heart failure

We are trying to raise money to help raise awareness of Fabry Disease.

Thank you for visiting our family's fundraising page. Donating through this website is simple, fast and totally secure. It is also the most efficient way to support our fundraising efforts.

To learn more about Fabry disease, please visit the NFDF website: www.nfdf.org.

Thank you for your support.

Love,

Robin and Trevor