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'Love for Alyssa': Examining arthrogryposis
July 2nd, 2012
07:35 AM ET

'Love for Alyssa': Examining arthrogryposis

Arthrogryposis has presented many challenges to Alyssa Jadyn Hagstrom. At just 8 years old, the condition has left her with no use of her legs and arms, and limited use of her fingers.

Alyssa is the subject of photographer Jennifer Kaczmarek’s exhibition called “Love for Alyssa,” which aims to use photography, video and an online blog to raise funds for Alyssa’s and others’ medical needs. The project has put a spotlight on the little-known condition.

Arthrogryposis causes limited range of motion in children’s joints and affects one in 3,000 infants, according to Donald Bae, an orthopedic surgeon at Boston Children’s Hospital.

Arthrogryposis is a general term used to describe many sub-types of conditions that result in stiff and contracted joints, Bae says. Typically, when people use this term, they refer to a specific type of arthrogryposis called amyoplasia, or arthrogryposis multiplex congenita.

Individuals affected by these conditions could experience internally rotated shoulders, arms positioned against the side of the body, wrists that are bent down or flexed, stiff fingers and thumbs, stiff and contracted knees and abnormalities in the development of the hips and position and form of the feet.

Those affected are typically of normal cognitive ability and intelligence, Bae says.

“Oftentimes, they are kids who are really bright, have wonderful personalities, are really smart and adaptive, but they have problems because their joints just don’t move,” Bae says.

Researchers don’t know definitively what causes these conditions, but arthrogryposis multiplex congenita is thought to be a sporadic event of genetic mutation in certain identified genes. It is not thought to be hereditary.

Several other causes could contribute to arthrogryposis, according to Susan Apkon, a rehabilitation physician who works in the arthrogryposis clinic at Seattle Children’s Hospital. Besides genetic problems, underlying neurological problems can cause arthrogryposis; so could a limited amount of space for a fetus to move during pregnancy, like when a mother is carrying twins or triplets.

The condition is apparent at birth, but there can still be challenges in trying to diagnose it prenatally, Bae says. Mothers of children with these conditions will often say they feel little fetal movement during pregnancy.

There is no known cure for arthrogryposis. Individuals who are affected typically have a normal life expectancy, if the condition does not come with confounding factors, such as breathing problems.

Although the condition is commonly associated with children, the symptoms often exist into adulthood. To treat these conditions, physicians and other experts try to restore as much movement as they can to the individuals’ joints to improve their motion and independence, Bae says. This often involves physical therapy and use of splints and surgery.

Children may work with an occupational therapist, Apkon says, to practice skills including the ability to feed themselves, get dressed, write and play.

Check out more information about the photo project "Love For Alyssa" on our CNN Photo Blog.


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soundoff (11 Responses)
  1. Dee Volpe

    One of my best friends has this. He is an incredible inspiration to all those who know him. Although he lacks the ability to move almost all of his joints, he lives an incredibly independent life with just a minimum of assistance. He has a wonderful personality, is intelligent and very socially active. He has a long term job and supports himself. The biggest lesson I have learned from him is don't ever pity yourself, anything is possible. And most of all, don't pity him, he is as an able body as the next and he would challenge you to prove him wrong.

    July 2, 2012 at 08:49 | Report abuse | Reply
  2. Frank Conway

    My sixteen year old grandson was born with arthrogyposis and his twin brother was not. He has no use of his legs except for repositioning himself in a chair or bed and very limited use of his arms and hands. He was fitted with an electric wheelchair years ago and is a master of its joystick. He is a straight A student and has a wonderful personality and is a charmer when it comes to the fairer sex. He had numerous operations when he was younger to help his joint movement but the doctors decided that he had mastered his disability and further operations would not help. Earlier this year he underwent a six hour operation to correct severe scoliosis and once again his personality shined brightly and his grades stayed up. I don't know how my daughter manages averything but she does and has said that she has seen more severe cases. His twiin borther is his constant companion and help buddy.

    July 2, 2012 at 11:27 | Report abuse | Reply
  3. Mark Jackson

    My son has AMC. He is 35, has a Master Degree and two Bachelor's degrees, he supports his self, lives on his own( with help from an aide), still active at his university's radio station, plays power soccer (excellent sport, check it out) has many friends, travels extensively, and writes better holding a pen in his mouth than most people do with their hands. AVENUES is the only organization that I am familar with associated with AMC.

    July 2, 2012 at 18:58 | Report abuse | Reply
  4. Donna Wyborney

    I really enjoyed reading the posts here about wonderful people with this condition. My 9-year old son also has Arthrogryposis. He and every other child & adult that I've met with this disability are so smart and personable. They amaze me with their determination to overcome limitations. Another wonderful online support system can be found at AMCsupport.org.

    July 2, 2012 at 20:30 | Report abuse | Reply
    • Kazimierz

      the 13604 dash is safe, but c4eva is still analyzing the uptdae.. so I dunno who to believe. I'm just gonna stick with c4 and play it safe just in case. He did state he doesn't expect anything unusual, but still not taking a chance

      November 16, 2012 at 00:51 | Report abuse |
  5. musings

    This series of photos is very poignant. Here is a child with normal potential, who is hampered by these uncooperative joints. I now think I understand what I have seen in my own neighborhood: a young man out sunning every day when the weather is nice, who is both marginalized and focused on due to his similar disability. I hope he has a loving family, but since he lives in assisted living, I am not sure.

    July 2, 2012 at 23:42 | Report abuse | Reply
  6. Amy

    My 2 year old daughter has AMC. We have found the most amazing support network through AMCSI. Without the guidance, love, support and the occasional shoulder – I would have been completely lost even this early in her little life. I love my AMC family, from the youngest new baby and their family to the oldest AMCer. Thank you CNN for putting this out there so more people learn that our kids are just like every other kid, their joints just don't move the same way.

    July 3, 2012 at 06:23 | Report abuse | Reply
  7. Kiersten

    Glad to see CNN giving exposure to arthrogryposis. Most of us parents with children with AMC never even hear of this condition until our child is born. These kids do amazing things – I know my 4 year old already has. The support group, AMCSI, has been a tremendous help in connecting us to other families throughout the world.

    July 7, 2012 at 11:16 | Report abuse | Reply
  8. Coreh Dameron

    Hi,

    I would like to know the correct procedure on how may I become involved as a guest speaker at one of your events or functions. My name is Coreh E. Dameron and I'm a 28yr old young motivated man from Chicago, IL who was born with a rare physical disorder called arthrogryposis which effects bone, spinal, muscular areas of the body. I could go further into detail about my upbringing, hardships, & triumphs but I'd rather you or your staff take a moment & review the 2 video/visual links I'm providing below. I've taken a re-evaluation of myself and the moral obligation to share my story with other individuals with disabilities along with inspiring others who just need a little motivation in their lives. I thank you in advance. God Bless.

    Trailer of Emmy Award Winning Doc: http://www.youtube.com/watch?v=9I-PfU6kWhw
    WCIU TV Interview: http://www.wciu.com/youandme.php?section=home&assets=videos&assetID=10007706
    YouTube Version: http://www.youtube.com/watch?v=yNiHNK2mlG8

    Humble,

    Coreh E. Dameron

    August 5, 2012 at 18:27 | Report abuse | Reply
  9. Speedygonzales

    This "free sharing" of inofmartion seems too good to be true. Like communism.

    September 14, 2012 at 00:24 | Report abuse | Reply
  10. Michele

    My son Wyatt has AMC. He is 14 years old. At first they told us he may never walk or pick up a fork. Now with many years of therapy and commit, Wyatt is playing scoccer and down hill sking. He even pitched an inning in his baseball team and struck out 2 batters. He has come a long way. I pray that all children born with the condition find their way in what makes them happy. God Speed to all who have this condition and to their care givers!

    February 9, 2013 at 10:53 | Report abuse | Reply

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Get a behind-the-scenes look at the latest stories from CNN Chief Medical Correspondent, Dr. Sanjay Gupta, Senior Medical Correspondent Elizabeth Cohen and the CNN Medical Unit producers. They'll share news and views on health and medical trends - info that will help you take better care of yourself and the people you love.