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I Need The Name Of A Rare Disorder.

Name a rare disease?

Hydradenitis Supuritiva - You think your acne was bad...check this out...

Scleroderma - When skin mutinies...

You can go to the link below and take your pick, but these are my two diseases of interest. I know someone with each disease.

What rare hormone disorder did the child from "The Orphan" movie have?

Well, most of you who have seen the movie know that the character was not a child at all, but was actually a thirty three year old woman who suffered from a rare hormone disorder called....
All I understood is "hypo" or "hyper" something. I suppose it was the doctor's (the Estonian mental institute doctor) accent that I had a hard time understanding, at least when he made reference to the hormone disorder.
Is there such thing as this disorder or is it fictional? I can imagine that this may have been exaggerated for the movie. I didn't think that the movie was that creepy until I found out that the little girl was a grown woman.
Was it hypoplaisa that Esther had and is it possible for someone with the disorder to actually remain childlike in appearance throughout adulthood?

By the way...I'm placing this under movies because I feel that people will more likely respond to my question if it's not under diseases or other medical categories.

Did you ever suffer from a rare disease, no medic could name for quite some time?

Yes! For years, I would get “lightening” attacks in my head that lasted about three days. During an attack I would get lightening strikes in my temple and the back of my neck feeling like some invisible demon had a sharpened spike and stabbed my head every two or three minutes, jerking me like a puppet. Picture that for three days. No medications worked, except narcotics and I was not quite willing to go down that path. After a couple of years of this, I went to my PCP (at the time) and he diagnosed “atypical migraine headaches” but had no solution for me. After I had some very intrusive dental work, the attacks went up in frequency to three or four over a year. Explained it to my dentist to see if the two were related and he said it could be; after some 360 degree x-rays, the dentist referred me to a neurologist. He had no clue after an MRI of my head and he didn’t prescribe narcotics. Fine. I tried going to a chiropractor as a last resort. He manipulated my neck and head. Attack stopped within an hour. At least I had a sort of solution that worked - I will not hear anything pejorative about chiropractors. Later, as I was surfing the net (by that time, EVERYONE was online) and stumbled across a description of trigeminal neuralgia. I screamed for my husband and gave him the article. When he was done, he yelled “that’s it!”. At long last, I had a name for the problem but still no treatment other than the chiropractor, even after a formal diagnosis of TGN. TGN has a long, infamous history as well as presenting as a chronic or sporadic ailment. From my reading, I’ve discovered that people afflicted with the chronic form of TGN have committed suicide to escape the pain. I understand why. Peace.

I need a complicated name of a disease?

Amyotrophic Lateral Sclerosis is a form of motor neurone disease (ALS, sometimes called Maladie de Charcot) is a progressive,[1] fatal, neurodegenerative disease caused by the degeneration of motor neurons, the nerve cells in the central nervous system that control voluntary muscle movement. In the United States and Canada, the condition is often referred to as Lou Gehrig's Disease, after the New York Yankees baseball star who was diagnosed with the disease in 1939 and died from it in 1941, at age thirty-seven; today, renowned physicist Stephen Hawking is likely the best-known living ALS patient. The disorder causes muscle weakness and atrophy throughout the body as both the upper and lower motor neurons degenerate, ceasing to send messages to muscles. Unable to function, the muscles gradually weaken, develop fasciculations (twitches) because of denervation, and eventually atrophy because of that denervation. The patient may ultimately lose the ability to initiate and control all voluntary movement; bladder and bowel sphincters and the muscles responsible for eye movement are usually (but not always) spared.

Cognitive function is generally spared except in certain situations such as when ALS is associated with frontotemporal dementia.[2] However, there are reports of more subtle cognitive changes of the frontotemporal type in many patients when detailed neuropsychological testing is employed. Sensory nerves and the autonomic nervous system, which controls functions like sweating, generally remain functional.

What is the most rare disease?

if only one person has it, this disease does not have a name yet.

Examples of rare diseases: Fields’ disease, Morgellons, Paraneoplastic pemphigus, Microcephaly, Von Hippel-Lindau (VHL), Kuru, Fibrodysplasia ossificans progressiva (FOP), Hutchinson-Gilford Progeria

What is the proper name of a rare diseases’ programme?

Try the GARD website Tips for the Undiagnosed.

Rare diseases?

this are just some you can find more at the link below

Acrocephalosyndactylia
Acrodermatitis

Addison Disease
Adie Syndrome

Adiposis Dolorosa
Alagille Syndrome

Amylose
Amyotrophic Lateral Sclerosis

Angelman Syndrome
Angina Pectoris, Variant

Angiolymphoid Hyperplasia with Eosinophilia
Arnold-Chiari Malformation

Arthritis, Juvenile Rheumatoid
Asperger Syndrome



Bardet-Biedl Syndrome
Barrett Esophagus

Beckwith-Wiedemann Syndrome
Behcet Syndrome

Bernard-Soulier Syndrome
Bloom Syndrome

Bowen's Disease
Brachial Plexus Neuropathies

Brown-Sequard Syndrome
Burkitt Lymphoma



Carcinoma 256, Walker
Caroli Disease

Chagas Disease
Charcot-Marie-Tooth Disease

Chediak-Higashi Syndrome
Chiari-Frommel Syndrome

Chondrodysplasia Punctata
Choreatic Disorders

Churg-Strauss Syndrome
Colonic Pseudo-Obstruction

Colorectal Neoplasms, Hereditary Nonpolyposis
Craniofacial Dysostosis

Creutzfeldt-Jakob Syndrome
Crohn Disease

Cushing Syndrome

Rare diseases?

For a big 300 point science project, we have to research a type of disease. I want to do one that is very rare and a lot of people haven't heard of it so it won't be chosen... Suggestions?

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