Holt-Oram

For people affected by HOS

A site for people who have or have an interest in HOS.

Latest Activity

Jessie Burgess updated their profile
yesterday
Becca Lane posted a status
"Wow! We've reached 250 members!"
yesterday
Profile IconJames A Wood, Jessie Burgess and Gloria joined Holt-Oram
yesterday
Becca Lane commented on Forest Gadd's photo
yesterday
Forest Gadd updated their profile
May 15
Forest Gadd posted photos
May 15
John Smith updated their profile
May 7
Chey Benson is now a member of Holt-Oram
Apr 26
Profile IconJoyce Runyon, Russel Flannery, debra burgess and 3 more joined Holt-Oram
Apr 22
Melissa Brodie replied to Gregory Allen Thompson's discussion My daughter and I have Holt Oram
"I'm with you Becca, I did the same with my hair!! I'm 40 now though & it's taken me this long to not give a damn about what others think.  I have a absolutely beautiful 9 y.o daughter who also has H.O & has shorter arms…"
Apr 17
Monica McGarry and Rita Gutierrez are now friends
Apr 15
Rita Gutierrez left a comment for Rita Gutierrez
"Would love to meet next time you are in town. lessburg is only 1hr from me."
Apr 15
Rita Gutierrez and kabakole are now friends
Apr 15
Becca Lane replied to Gregory Allen Thompson's discussion My daughter and I have Holt Oram
"That's a difficult one! I always knew I was different and people treated me differently, I went through a phase in my teens where I hated it. I hated people helping me I hated people looking at me. I dyed my hair pink so people would look at me…"
Apr 13
Profile IconAngel and Tiara Stidham joined Holt-Oram
Apr 13
bobbie maccormack and Sherry Sletvik are now friends
Apr 12

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What is Holt-Oram syndrome?

Also known as heart-hand syndrome this condition has a lot of different permutations. People with HOS often have upper limb growth abnormalities which can range from being very minor to having parts of arms / fingers / thumbs missing. Often the collar bone is also quite small. In about 75% of cases the heart is also affected, this can be in a variety of ways, ranging from normal function to VSD / ASD, conduction disorders, holes in the heart etc.
Holt-Oram is listed as a rare disease and is estimated to affect 1 in 100000 individuals. HOS is caused by a mutation of the TBX5 gene, this mutation can occur in people with no history of the mutation in their family. HOS is an autosomal dominant disorder which means that only one copy of the mutated gene needs to be passed on in order for a child to inherit the condition, this makes it a 50% chance that the condition will be passed on to children.

This information has not been put together by a health professional, this is simply my understanding of the condition I have. If you feel that there are mistakes in what I have written please let me know and if you want more detailed information please see one of the links.

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My daughter and I have Holt Oram 2 Replies

Started by Gregory Allen Thompson. Last reply by Melissa Brodie Apr 17.

Chubsy and Fleur - The difference a name makes... 3 Replies

Started by Becca Lane. Last reply by Sallie Rebecca Humphreys Apr 11.

Pain relief? 2 Replies

Started by Sallie Rebecca Humphreys. Last reply by Sallie Rebecca Humphreys Apr 11.

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