Rare Diseases in the News

Posted by JohnM: 2008-11-05 22:01:09

There are several rare diseases with some of them without known cures moreover; people are prone to such diseases depending on their genes, geographical location, diet and other factors. One of these diseases is mitochondrial disease, which occurs because of the mitochondria in the body failing to function, as they should. This severely affects the organ systems in the body since the mitochondria cannot provide the organs with the energy required for them to continue functioning normally. Body parts that need the most amount of energy for them to function include the brain, liver, heart, ... more

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UPDATES ON RARE DISEASES

Posted by SethM: 2008-10-24 08:05:41

If everyone will notice, as the population of the world increases, rare diseases also emerge— these maybe due to man’s wrongdoings or because of the changes of environment. Majority of these diseases are not curable and fatal. The following news updates are examples:


October 1, 2008

A one-year old American named Isiah Washburn has been diagnosed of Hurler Syndrome. A website for Isiah claimed that this disease is fatal, incurable, fatal, and no immediate medication. Fundraisers are good enough to decide to help in the child’s condition.

Only two hospitals in the entire United ... more

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The Scourge of Rare Diseases

Posted by JohnM: 2008-10-13 11:17:18

Waging a war against a serious disease can be one of the most difficult battles in life. When it comes to rare diseases, the challenge is even greater. Many such diseases are caused by genetic changes and/or exposure to certain environmental elements.

For some of the rarest diseases in the world, though, like Kuru, a fatal neurological disease, you’d have to be transported to remote New Guineau and eat the brains out of a surviving disease carrier. It’s that rare.

In modern times, rare diseases of different kinds continue to plague the unsuspecting segments of the populace who tend ... more

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Primordial Dwarfism

Posted by summerbanks: 2008-09-08 01:19:38

Not really a disease but more a condition, primordial dwarfism is one of the rarest forms of dwarfism on earth. Primordial dwarfs are tiny versions of the full scale human body often taking more than 10 years to reach a mere 24 inches in height.

Primordial dwarfs often have reduced life spans and trouble with hip joints due to a curvature of the upper thigh bone.

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What Is ALS?

Posted by JohnM: 2008-07-26 16:04:52

What is ALS? ALS or Amyotrophic Lateral Sclerosis is one of those rare diseases that afflict the muscles throughout the entire human body. ALS is also known as Lou Gehrig's disease and is a progressive neurological disorder that goes after the motor neurons responsible for the control of muscles. There is no cure for ALS and it only worsens as time goes on.

ALS kills the motor neurons over the course of time and causes them to degenerate until they are no longer any good. ALS also eventually does affect all the muscles that one can control in addition too.
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Ehlers Danlos Syndrome: Rare Disease Or Freak Show?

Posted by 1inamil: 2008-06-24 19:34:27

This is really a funny story although it does have a serious discovery that goes along with it. I had just begun seeing a new physician that had discovered that I had a joint problem. See all my major joints would dislocate often. She told me I needed to see a orthopedic doctor for a diagnosis. It was her belief because I was so short and had little hands that I had some form of dwarfism. I found this hilarious. Not that being a dwarf is funny, but that I was 28 years old and being told for the first time that I was a dwarf. Well I did see that orthopedic doctor and there was a problem but it ... more

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When Support Seems So Far!

Posted by JohnM: 2008-03-18 00:52:53

Rare diseases are often those that are misdiagnosed, hard to live with and difficult to bear on a daily basis. Living with a rare disease can be even worse.

Finding support for a rare disease is the most important part second only to treatment of the disease. The human mind is a healer by nature and with the right support, healing can begin in the deepest part of the heart.

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Finding the Right Rare Disease Doctor

Posted by 1inamil: 2008-03-08 02:35:24

Often with rare diseases, the major obstacle to proper treatment is identification. Once this is surmounted, finding proper treatment itself can be difficult, as pharmaceutical options may be limited or expensive. Certain rare diseases, like Kaposi’s Sarcoma, may indicate an autoimmune condition like AIDS.

Finding the right doctor to treat a rare disease means interview after interview. Prepare yourself before visiting a doctor with a list of questions you want to ask, make sure the consultation is free of charge and check on his ratings with other patients.  more

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Rare Disease and Children Support

Posted by JohnM: 2008-03-07 02:15:32

I found this site and I had to pass it on. The site offers to link up families with disabled children with information and support. It is based out of the UK, but disease knows no country boundaries.

The site link http://www.cafamily.org.uk/home.html.

I hope this will be of use to many of you out there!

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New Treatment Approved for CAPS

Posted by JohnM: 2008-03-05 15:02:00

According to a press release, a new treatment has been released for CAPS syndrome. The release offered some great information on the syndrome, including..."Symptoms of both of these disorders include inflammation such as joint pain, rash or skin lesions, fever and chills, eye redness or pain, and fatigue in both children and adults; however MWS is associated with more severe inflammation and may include hearing loss or deafness. In addition, some MWS patients may also be affected by the buildup of a protein substance that damages organs and tissue (amyloidosis). The FCAS and MWS disorders ... more

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