Holt-Oram

For people affected by HOS

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

Latest Activity

Becca Lane commented on Brent Moore's photo
yesterday
Brent Moore posted photos
Tuesday
Profile IconBrent Moore and Amanda Moore joined Holt-Oram
Tuesday
Becca Lane replied to Becca Lane's discussion Rib pain
"So my lungs are functioning normally but they are 80% of the size they should be. Chest X-ray next!"
Tuesday
Jessie Burgess and Stephanie Meyer are now friends
Apr 11
Melissa Brodie left a comment for michelle hall
"Hi Michelle, My daughter Caitlin has HOS & her arms are very similar to Adrianna's, Caitlin is now 10 & copes fairly well, I shall try to figure out how to load some pics so you can see her, I also have HOS, as did my Father & 2 of…"
Apr 7
Melissa updated their profile
Mar 29
Becca Lane replied to Becca Lane's discussion Rib pain
"Will do xx"
Mar 29
Sallie Rebecca Humphreys replied to Becca Lane's discussion Rib pain
"I hope they go okay - let me know how you get on? xxx"
Mar 29
Profile IconCharles Auer and Melissa joined Holt-Oram
Mar 29
Becca Lane replied to Becca Lane's discussion Rib pain
"I found that online and wondered if that's what it might be. I'm having trouble breathing sometimes so I'm having some lung function tests on Monday x"
Mar 29
Sallie Rebecca Humphreys replied to Becca Lane's discussion Rib pain
"Becca lovely, could it be Costochondritis? I get rib pain too, and my doctor diagnosed this a few years ago! Probably is because our backs are a bit unusual, we're just a challenge for these doctors :p xxx"
Mar 29
Nicola Morgan posted a photo
Mar 14
Becca Lane commented on Dennis Aspö's photo
Mar 10
Becca Lane commented on Dennis Aspö's photo
Mar 10
Becca Lane replied to Dennis Aspö's discussion My boys
"Hi Dennis, Of course you belong on the website! Even if it's not exactly the same you may well find people have had similar experiences. So glad the boys are doing well :-) Becca"
Mar 10

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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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Rib pain 5 Replies

Started by Becca Lane. Last reply by Becca Lane on Tuesday.

My boys 2 Replies

Started by Dennis Aspö. Last reply by Becca Lane Mar 10.

Hello! 6 Replies

Started by Sommer Raines. Last reply by Sommer Raines Mar 10.

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