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Hurler Syndrome

What is Hurler Syndrome?

Hurler Syndrome is a rare disorder characterized by the buildup of mucopolysaccharides due to a deficiency of alpha-L iduronidase.

 

Hurler Syndrome is a rare disorder characterized by the buildup of mucopolysaccharides due to a deficiency of alpha-L iduronidase.
1.3http://www.orpha.net
Synonyms for Hurler Syndrome has not been added yet.
Cause of Hurler Syndrome has not been added yet.
There are several symptoms that affect people with Hurler Syndrome.
Name Description
Facial Features Thick, coarse facial features with low nasal bridge.
Halted growth Halted growth
Claw hand Claw hand
Abnormal bones in the spine Abnormal bones in the spine
Cloudy corneas Cloudy corneas
Progressive mental retardation Progressive mental retardation
Deafness Deafness
Joint disease Joint disease
Diagnosis is often made through clinical examination and urine tests.
Diagnostic tests of Hurler Syndrome has not been added yet
Enzyme replacement therapy helps the body make alpha-L-iduronidase. Bone Marrow Transplant
Prognosis of Hurler Syndrome has not been added yet.
Tips or Suggestions of Hurler Syndrome has not been added yet.
References of Hurler Syndrome has not been added yet.
Hi, Guys! I'm Sarah. Created by Leelismom2
Last updated 12 Apr 2016, 04:20 AM

Posted by marcusdad
12 Apr 2016, 04:20 AM

Hi Sarah, I was moved my your post, but sorry I can't answer the question about parents leaving their children. A lot has changed in treatment for Hurlers and things have gotten better. My son Marcus is 23 years old now and was 18 months old when he was diagnosed in 1994 and had a bone marrow transplant. Since then his quality of life has improved but he still has come challenges. He is learning to live on his own, trying to get a job and attend classes. Its a struggle but he is a happy person.

Posted by Leelismom2
11 Apr 2016, 11:38 PM

I'm here trying to find information on this because my parents are both carriers. My sister, younger, is a carrier, I had four brothers born afflicted, and I'm not a carrier. I was born in '85, my parent's first baby without Hurler's. They raised my brothers, Michael and Nicholas, but left the two other boys at the hospital. It seems as though the life expectancy has greatly improved, Michael was 6 when he passed away, and Nicholas wasn't yet 2. Was it common for parents to leave their children? My parents won't talk about any of it anymore. I'm sure it's a painful topic. I just wish I could understand more, I guess.

Length of life for these children Created by Fatemah
Last updated 10 Oct 2013, 08:19 AM

Posted by Nathansmom
10 Oct 2013, 08:19 AM

My son is 17 years old and was just diagnosed with Hurler Syndrome 6 weeks ago. He is devastated as are we, his family. He has had multiple health problems since birth and despite all the doctor visits no one knew he had Hurlers. He was seen by a geneticist in Albuquerque in August and finally given a diagnosis.

Posted by marcusdad
4 Feb 2010, 07:26 AM

Hello, I just discovered this site today. Just want to add our story. My son, Marcus, is 16 years old and is 15 years post BMT. He was diagnosed with Hurler's Syndrome back in 1994 when he was 16 months old. His website is www.caringbridge.org/visit/marcusespino. We have been through a lot over the years, but he is doing well, loves high school, texting and talking on his cell phone, hanging out with friends, going to football games, basketball games and the dances. He is a happy go lucky teenager we refer to him as our miracle child. He has had the double knee stapling, pins in both ankles, double hip surgery, both eyes corneal transplant, and most recently, open heart surgery to replace the aortic valve.

Posted by tlwalker72
23 Jan 2010, 01:51 AM

My son is 3 and a half and was diagnosed a little over 1 year ago with Hurler Syndrome. He has since had a stem cell transplant (9 mo ago) and is now making the enzyme on his own, but his body is still fighting the transplant (hemalytic anemia) You can follow his story @ www.caringbridge.org/visit/tylerwalker We pray everyday that he fully accepts the transplant until then we just take it one day at a time. Tyler vwasn't diagnosed until he was 2 and a half which is late, but at least he is now getting all the treatments to help him fight this. Please contact me if you want to share.

View Full Thread (9 more posts)
Ontario Canada? Created by Fatemah
Last updated 7 Sep 2009, 05:39 PM

Posted by Fatemah
7 Sep 2009, 05:39 PM

I was wondering if there was anyone on here who lives near us in London, Ontario (Canada)... I would love to meet up with other mothers if possible.... thankyou so much....

lalal8!!! Created by Fatemah
Last updated 9 Sep 2009, 02:47 AM

Posted by Fatemah
9 Sep 2009, 02:47 AM

Hi there, My daughter Fatemah was born July 24th 2009... our children are close in age and although we are currently in the NICU in London ON, we are from Windsor ON.... if you are looking for support let me know inshaAllah ok?

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Community User List

I have a son with Hurler's syndrome. He is 17 and just recently diagnosed. I want to learn more about treatment etc...
I am a grandmother of a 19 month old with Hurlers. She is presently started ERT and awaiting a bone marrow transplant. My son is not with her mother so she lives with us part time. What a joy , ...
I am a mother of a 14year old Hurler child. He was given a stem cell transplant 9 years ago,
I have had Hurlers Syndrome for as long as I can remember. My parents were told by doctors at Wylers Childrens Hospital in Chicago that they would not expect me to live past my 21st birthday. Her...
My brother, 5 years younger than me had Hurlers Syndrome.
i had niece and nephew who had hurlers syndrome unfortunately the both died in childhood i am interested in rare syndromes
My name is Cheryl and my grandson has MPS 1, he was diagnosed when he was 10 months old. He is currently in the Calgary Children's Hospital and is on his second transplant.
Grandma to four, including a sweet boy with Hurler Syndrome, complicated by learning delays and autism Spectrum Disorder ( ASD).
My son was 23 years old and 20 years post bmt for treatment of Hurler's Syndrome and just died on May 10 (2010) from a cancerous tumor in his lower jaw. I am joining this forum in hopes of helping...
I live in Hollister Calif. My son Marcus was diagnosed with Hurler's Syndrome in 1994. He is 15 years post BMT
My son Tyler was diagnosed this past year with Hurler Syndrome. He has since then had a Stem Cell Transplant on April 10 2009 at All Children's Hospital. He has been in and out of the hospital sinc...
I am a Pediatric Case Manager for a healthplan, and I case manage a child with Hurler's Syndrome. I want to be more informed about this rare disease.
I am the Grandma of an adorable bright 2 year old with Hurler Syndrome. Since being diagnosed in August 2009, we are exploring treatment options.
I am working as a social worker with a client whose family has been affected by this condition. I want to learn more to help support my client. I can offer no information due to confidentiality iss...
My God daughter died of Hurlers and I am interested in learning more.
My son Bogdan (born in May, 2008) is was diagnozed wirh Hurler's syndrome in March, 2009 and had a cord blood transplantation in May, 2009. Now he is recovering at home.
Hi my name is Amanda Marsh, my 19month old son was diognosed with hurler syndrome about 2 weeks ago. he has had a lot of medical problems since he was 2 months old.
Happily married to my husband, Ray. We have one little miracle in our life, Caleb, who was diagnosed with MPSI- Hurler Syndrome, when he was 13 months old on January 4, 2002. Caleb had a BMT on J...

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Hi, Guys! I'm Sarah.

Created by Leelismom2 | Last updated 12 Apr 2016, 04:20 AM

Length of life for these children

Created by Fatemah | Last updated 10 Oct 2013, 08:19 AM

Ontario Canada?

Created by Fatemah | Last updated 7 Sep 2009, 05:39 PM

lalal8!!!

Created by Fatemah | Last updated 9 Sep 2009, 02:47 AM


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