FAQ - arthrogryposis
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Would an illness such as Arthrogryposis be considered a chronic illness.?


Arthrogryposis is an illness that one has since birth and is incurable. Is this illness considered a chronic illness?
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Yes it is, a chronic condition is one that stays around for over 6 months.  (+ info)

Do guys with arthrogryposis normally have a smaller than average penis?


Do guys with arthrogryposis multiplex congenita usually have a smaller than average penis or a micropenis?
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I don't know about normally, but a microphallus is one of the symptoms.  (+ info)

What is treatment of Arthrogryposis Multiplex ?


Is it possible that arthrogryposis multiplex get a better?
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AMC does not get "cured", but with proper treatment a child can have better function. Treatment usually consists of physical therapy (stretching and massage), casting (putting legs/feet in a cast and reapplying it every week or so while stretching the joints a little more each time), splints and braces, and surgery. A child with AMC will need to be seen by an orthopedic surgeon and a physical therapist in the beginning, with other specialists as necessary. Children can and do learn to walk and live independent lives, depending on the severity of their contractures and muscle loss.  (+ info)

Please help to find someone who has the disorder Distal Arthrogryposis.?


I need help finding someone who has a rare disorder called Distal Arthrogryposis. Thank you if you help out.
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Sorry, my english is bad. If you want ask me or look to www.arthrogryposis.de. Greetings from Germany Wilhelm  (+ info)

Is there some place where arthrogryposis kids can go to?


A place that can teach kids how to become indepent and live on their own when their out of high school.
Like a camp or something.
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I am not sure where you live. Where I live, there is camp for all special need camps, medicaid waiver provides people instruction on independence, occupational therapy, and the independent living center.

Howvver, depending on the severity or the number of joints involved, children with arthrogyrposis may need some type of caregiver assistance throughout their life time. But SSD and medicaid cover that.  (+ info)

20 week old fetal diagnosed with fetal diagonised with Arthrogryposis?


My sil is now 22 week preg.On her 20th week ultrasound there was lack of any movement of the fetal and was diagnosed as Arthrogryposis in the baby.The arms n legs are not moving.Breathing is normal.Doctors says there is no hope of its living a normal life and one of the option is termination and has to be done before 24th week.SIL and family are confused what to do...continue or terminate
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have her try thses links maybe she can find out if they can help her baby when he/she is born i wish her the best in luck but tell her dont terminate the baby due to this there is help out there that she can get for her baby  (+ info)

Could Epilespy be the cause of my daughter's Arthrogryposis?


From the time I was 6 to the time I was 16 I had Epilepsy. I am 19 years old almost 20, and 9 months ago I had a beautiful baby girl. (Please don't judge: I am happily married to a wonderful husband, so there was no wedlock birth) Anyways she was born with Arthrgryposis Multiplex Congenita, and I was wondering if my Epilepsy- even if I did out grow it- could have caused my daughter's Arthrogryposis.
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Do you have any other health problems or symptoms? Do any other health problems run in your family?

The reason I ask is that sometimes there are other underlying conditions that can cause both epilepsy and birth defects in your children. I wouldn't think that epilepsy would cause this if you weren't having seizures when you were pregnant and you weren't on medication for it, but if there was something else that was causing your epilepsy it can affect your child. I have a similar experience. My daughter was born with congenital birth defects (although she's fine now, and smart and beautiful and amazing!), and it wasn't until a a couple years after she was born that I found out I have celiac disease which is an autoimmune disease. I had had some random symptoms that I didn't pay much attention to, and then when I got the diagnosis, I found out that people with untreated celiac disease are more likely to have children with birth defects. Definitely make sure you are looking at possible underlying causes of your seizures if you plan on having more children. It may be random, but it's definitely worth looking into. :-)  (+ info)

since arthrogryposis is a genetic disorder can it be detected before birth?


Yes.  (+ info)

can a woman with arthrogryposis still have kids without them getting it?


maybe this will help....

WHAT: Arthrogryposis is a rare, often inherited, condition that is characterized by the presence of multiple joint contractures that result in limitations in movement throughout the entire body. These joint problems, present at birth, are usually a result of decreased movement of the baby during pregnancy. There are many causes of this disorder and it can result from nerve, muscle, connective tissue, or mechanical problems.



WHO: The estimated frequency of Arthrogryposis is about 1 in 3,000 live births. This disorder is found in all ethnic groups and in boys and girls equally. There are many different forms of this disorder. In one form, the X-linked recessive form, males are primarily affected. This is because males have only one copy of the X chromosome, inherited from their mother. If the abnormal X chromosome is inherited from the “carrier” mother, the child will have symptoms of the condition.




SIGNS & SYMPTOMS: Children with Arthrogryposis may have the following signs and symptoms:
• contractures
o Multiple contractures of the distant joints (ankles, knees, wrists) than the more centrally located joints (shoulder, elbow, hip).
o Joint dislocations – most commonly the hips.
o Small muscles
• Deformities
o Face - flat bridge of the nose, small jaw, decreased range of motion of the jaw
o Limbs – shortened, webbed, absent knee cap.
o Other – abnormal curve of the spine (scoliosis), hernias.
• Malformations
o Central nervous system – leading to seizures, mental retardation, abnormal shape of skull, eyes, and palate.
o Respiratory – narrowing of the airway, weak diaphragm muscles.
o Limb – fused fingers and toes.
o Other – heart, kidney, and muscle abnormalities.
• Connective Tissue Abnormalities
o Skin webs and dimples over affected joints.
o Abnormal skin feeling – soft, thick, or elastic.
o Nail changes.




POSSIBLE CAUSES: Arthrogryposis is a physical result of decreased movement of the baby during pregnancy that can be caused by several conditions. These different conditions fall into the broad categories of environmental agents, genetic defects, chromosomal abnormalities, and other syndromes.




DIAGNOSIS: Making the diagnosis of Arthrogryposis is usual done by finding the above described characteristic physical findings, taking a complete family and pregnancy history, and appreciation of the other associated clinical features. Identifying the specific muscle, nerve, or bony disorder responsible for arthrogryposis can be performed with blood tests and tissue biopsies. Imaging studies such as x-rays are used to evaluate bony abnormalities and scoliosis.





TREATMENT: The approach to treatment of arthrogryposis involves a multi-disciplinary effort with physical therapists, orthopedic surgeon, plastic surgeon, and many others. Early physical therapy to stretch areas of contractures is critical to preventing muscle wasting and to preserve mobility. Bracing or splinting is also important to maximize range of motion. Surgery is often needed to correct extreme deformities in the feet, knees, hips, and even arms. There is no known cure for arthrogryposis but with early intervention, the functionality needed to accomplish activities of daily living can be preserved.



PROGNOSIS: The prognosis for children with Arthrogryposis is highly variable. Most children with body impairments that are not life threatening are expected to mature and become adults with a normal life expectancy. Some children, however, may require a higher level of care throughout life due to more severe malformations. Children with limb and central nervous system involvement are frequently hospitalized in the first year of life and those with scoliosis or abnormal curvature of the spine may have chronic breathing problems.






WEBLINKS: The Arthrogryposis Group
http://www.tagonline.org.uk/
Uk based website, supportive group for families, lots of useful information, allows affected individuals to network.

Avenues
http://www.sonnet.com/avenues
Support group for individuals, families, and medical professionals related to Arthrogryposis.

National Organization for Rare Disorders
http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Arthrogryposis%20Multiplex%20Congenita
National website dedicated to rare diseases.

Family Village Library
http://www.familyvillage.wisc.edu/lib_arto.htm
Good website to start at, lots of useful sublinks.

Contact a Family
http://www.cafamily.org.uk/Direct/a72.html
Useful website for seeking support and contact information.

March of Dimes Birth Defects Foundation
http://www.modimes.org
Nonprofit organization focused on raising awareness and uniting families.




REFERENCES AND SOURCES: www.emedicine.com/ped/topic142.htm (Emedicine)

my.webmd.com/hw/health_guide_atoz/nord211.asp (WebMD)

www3.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=108110 (OMIM)


Gordon N: Arthrogryposis multiplex congenita. Brain Dev 1998; 20: 507-511

Hall JG: An approach to congenital contractures (arthrogryposis). Pediatr Ann 1981 Jul; DA - 19811025(7): 15-26  (+ info)

What are effective ways to treat arthrogryposis?(AMC)?


give me URLS
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Here are a few to get your started.

http://www.msnyuhealth.org/hospitals/hjd/html/body_arthrogryposis.html

http://www.e-radiography.net/radpath/a/arthrogryposis.htm

http://www.drgreene.org/body.cfmid=21&action=detail&ref=107

http://www.emedicine.com/ped/topic142.htm  (+ info)

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