Silver Linings on Dark Clouds: my life with Alport’s Syndrome.
Quite a few people over the past decade or so have asked me to write about my fight with Alport’s Syndrome.
When I was diagnosed in 1998, I was told by my General Physician/Practitioner and Nephrology Department, was that Alport’s Syndrome is a rare, degenerative kidney disorder that cause the kidneys to stop filtering and cleaning blood of impurities. Side effects included lenticular (curved) eyes (that may or may not affect vision), extreme fatigue and hearing loss. I was also told it strikes mostly males of african american descent, although caucasian females have been known to developed kidney failure. Since the intermediate years,The National Institute of Health has on their National Library of Medicine website http://www.nlm.nih.gov/medlineplus/ency/article/000504.htm:
“Alport syndrome is an inherited form of kidney inflammation (nephritis). It is caused by a mutation in a gene for a protein in the connective tissue, called collagen.
The disorder is uncommon. It most often affects males. Women can pass the gene for the disorder to their children, even if they have no symptoms.
Risk factors include:
- End-stage kidney disease in male relatives
- Family history of Alport syndrome
- Hearing loss before age 30″
The National Institute of Health also describes symptoms on the above cited website:
“The disorder damages the tiny blood vessels in the glomeruli of the kidneys. The glomeruli filter blood to make urine and remove waste products from the blood.
At first, there are no symptoms. However, the destruction of the glomeruli over time leads to blood in the urine and may decrease the effectiveness of the kidney’s filtering system. Often kidney function is lost over time and waste products and fluids build up in the body.
In women, the disorder is usually mild, with few or no symptoms. In men, the symptoms are more severe and get worse faster.
- Abnormal urine color
- Ankle, feet, and leg swelling
- Blood in the urine (may be made worse by upper respiratory infections or exercise)
- Decreased or loss of vision (more common in males)
- Flank pain
- Loss of hearing (more common in males)
- Swelling around the eyes
- Swelling overall
The condition can progress to end-stage renal disease (ESRD) at an early age (between adolescence and age 40).
Note: There may be no symptoms in some cases. Symptoms of chronic kidney failure or heart failure may be present or may develop.”
In the biography, I discuss the affects of Alport’s Syndrome on my health (including congestive heart failure caused by the Kidney Failure, as well as a few other heart diseases/issues directly caused by the Alport’s Syndrome), my career, my personal life such as housing, finances and my dealing with government organizations and hospitals. It was a wild ride and you’ll want to hold your breath as I take you through the trials me and my family went through.
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