Born Without Skin, A Rare Genetic Disease
Harlequin Ichthyosis is a rare genetic disease that distorts the skin into layers forming thick white plates with deep cracks. It affects 1 in 500,000 births, often fatal due to dehydration, sepsis, and breathing problems.
Harlequin Ichthyosis is caused by the ABCA 12gene, important for protein synthesis for the development of skin. Lifelong constant care is required to moisturize and protect the skin. Life will be challenging for those born with this rare disease and for their families.
It is nearly always fatal but medical science is constantly evolving finding cures and treatments for many diseases. It takes special parents with a great deal of patience, love, and kindness to care for them. A parent's love is unselfish and never-ending.
There are a few born with this rare genetic disease who have gone on to live lives that show how they cope and adapt. They certainly are very special people and don’t wallow in self-pity.
Here Are A Few Notable, Special People With Harlequin Ichthyosis:
- Devon Mahadeo was born in 1985, in Trinidad and Tobago. Devon lived to be 37 years old but accomplished what few of us do. He was involved in…
