TrichoRhinoPhalangeal Syndrome is a very rare genetic syndrome, where damage & mutation to the number 8 chromosone affects sufferers in numerous ways. There are 3 recognised forms of the syndrome: Type 1, Type 2 or Langer Gideon Syndrome & Type 3. All have slightly different recognised traits.
Unlike Down's Syndrome, TRPS isn't so easily spotted at birth. Classic TRPS pointers are odd shaped & odd length fingers & toes (phalanges), problems with early hair loss or fine whispy hair, in both males & females, short stature, over crowding of & problems with teeth, problems with joints particularly knees & hips, asthma & other respiratory problems.
The condition is genetically dominant so if a suffer has children, there is a 50% chance of passing the condition on.
Useful TRPS Links
Inofrmation & Support
- TRPSA
- Trichorhinophalangeal Syndrome Association.
A yahoo & email based support group offering support & advice to sufferers & their families.
Due to privacy issues it is a members only group & members are "vetted" before being allowed to join.
Medical professionals are also members of the site & often offer information & advice. - National Institution of Arthritis and Musculoskeletal and Skin Diseases
- Specialists in Musculoskeletal Disorders
- The Hip Society
- Orthopedic Links including lists of Surgeons
- Active Joints
- Information about joint replacements,especially for younger people (younger can mean 40 year olds as many joint replacements won't be undertaken until the patient is into the 60s & 70s)
- Arthritis Foundation
- Information on Arthritis
- American Acdemy of Pain Management
- Does what it says on the tin!
- American Acdemy of Pain Medicine
- List of useful links
- Back Pain
- Useful site about back pain issues
- Bandaids & Blackboards
- Site offering help & information for suffers of any age, suffering from any disability
- Bone Disorders
- Useful Bone disorder links
- FISH test
- Information about the FISH test, which can be used to diagnosed TRPS
- Langer Giedion Syndrome
- Information about Type 2
- TRPS type 1
- Information on TRPS type 1
- TRPS 3
- Information on TRPS type 3
- The Child's Doctor
- Information about the FISH analysis test, information about diagnosing TRPS & photos showing standard festures of a child sufferer (at the end of a list of other syndromes so keep scrolling!!)
- Langer Giedion Syndrome
- More info on LGS
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