Rare Disease Day – February 28

Today is National Rare Disease Day. A rare disease typically occurs in less than 200,000 people in the United States and many who suffer from the so-called “orphan” disease often go undiagnosed for years and often little is known about treatment, causes or cures.  The National Institutes of Health Office of Rare Diseases recognizes nearly 7,000 rare diseases. I learned about this in the Nutriwellness Newsletter.  Eleven diseases were mentioned.  I will list the eleven diseases.

Alkaptonuria – This rare disorder causes acid to accumulate in the body destroying connective tissue and bone.

Bloom Syndrome – This genetic disorder causes short stature, increased sensitivity to light, increased infections and an increased risk of cancer.

Kohler disease – This is a rare bone disease most impact children ages 3-7 and fortunately grow out of the disorder.

Retinoschisis – A condition where the eye’s retina splits into two layers causing progressive loss of fields of vision.

Wilson’s Disease – Occurs because of excess copper being stored in the body.  If left untreated it can cause liver disease and central nervous system damage.

Organic Personality Syndrome – Those with this suffer from short- or long-term disturbances in personality.

Grover’s Disease – This occurs when the “cement” that holds skin cells together is lost.

Gottron Syndrome – This inherited disease has only be documented in 40 people.  It is characterized by premature aging.

Ciguatera Fish Poisoning – This occurs in people who have eaten fish that contain toxins produced by microalgae called Gambierdiscus toxicus.

Moebius Syndrome – Involves two cranial nerves that are absent or not developed and results in facial paralysis.

The Obesity Virus – Studies suggest that an adenovirus AD-36 may be involved in obesity.

To read more about these diseases click on the link above.  There are also links in the Nutriwellness Newsletter that I found very interesting.  Another site I visited was the Rare Disease Day site.

I talk about all the difficulties I face with my environmental illness, food allergies and mold and mycotoxin issues.  While this illness is often misunderstood I have learned that it is far from rare.  While checking out the rare disease day site, I took a moment to watch a video of a young man singing his song.  He is blind and has a myriad of other issues.  The song touched my heart.  To all those suffering from a rare disease, you have my admiration for your fight.

http://www.youtube.com/watch?feature=player_embedded&v=VumaWumENEk

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4 responses to “Rare Disease Day – February 28

  1. EXCELLENT INFORMATION –KATHERN— WE CAN ALWAYS LOOK AROUND US & FIND SOME ONE WHO NEEDS HELP & ENCOURAGEMENT!!! THANKS FOR SHARING!!! & MY PRAYERS TO ALL WHO SUFFER FROM RARE DISEASES & THEIR FAMILIES!!

  2. Pingback: Rare Disease Day – February 28 | allergictolifemybattle | sondasmcschatter

  3. Thank you. I’m collecting monthly events/holidays so I can do a blog the first of the month. (I was late for March, but I think I got the most important ones.) I’ll add this one. My Myasthenia Gravis is considered uncommon. I learned about in nursing school, but I was the first ‘patient’ with it – 42 years later. I was the first case for my family MD, but now he has 2. I’m tired of being sick, tired, and in pain. I keep asking God for a healing, but so far no answer.

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