For people affected by HOS

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

Latest Activity

Floyd Lombardi is now a member of Holt-Oram
21 hours ago
Elodie Brugallé is now a member of Holt-Oram
Nov 9
Melissa Brodie replied to Tammy's discussion Having HO and wanting children
"Hi Tammy, sorry to hear about the loss of your baby girl, I'm 42 & have H.O, I have a 12 year old daughter who also inherited H.O, she has phocomelia (not sure if I spelt that correctly) in her left arm, her right arm is also short. Cait…"
Nov 1
Tammy replied to Tammy's discussion Having HO and wanting children
"Apologies for the typos - challenging on my phone to write that much."
Oct 24
Tammy replied to Tammy's discussion Having HO and wanting children
"I want to thank everyone again for their support and adevice. Sadly, shortly after this post we learned that our baby was a girl, and her case was more severe than we could have imagined. We made the heartbreaking choice to terminate the pregnancy.…"
Oct 24
Monica McGarry commented on Dennis Aspö's photo


"Oh, oh, they look very much like my son and he (still) likes to pick things apart so you better watch out :)"
Oct 23
Angie Poynter updated their profile
Oct 21
Becca Evans left a comment for Kathy Schultz
"Thank you Kathy. I'm starting to get back on track now but it's been a tough few months. There is a member on here called Sallie who I know has had a tough time with shoulder pain, she may be able to offer you some advice. I discovered a…"
Oct 21
Becca Evans replied to Dennis Aspö's discussion Satisfied with your hands?
"Hi, I had a policisation when I was a baby but it wasn't really very successful. I can't use the finger / thumb much and it feels a bit alien. But you have to remember I had my surgery over 30 years ago, it was still quite experimental…"
Oct 21
nazmin akhtar posted a status
"hi becca so sorry for your loss.God give u strength. my prayers are with youx"
Oct 21
Dennis Aspö posted a discussion

Satisfied with your hands?

I'm just wondering, if you're an adult who has had pollicization surgery (as a kid mainly is what I'm curious about)... how satisfied are you with your hands?Can you do all the normal things people do or do you feel limited? Does it feel natural for you? I'm asking because our boys are going under the knife soon and I have no idea what to expect, what they'll be capable of. I mean I do some woodworking as a hobby, is this something they can do, hold a hammer,  a saw, chisel?See More
Oct 21
Dennis Aspö posted a status
"Pollicization surgeries for their right hands are scheduled for next week on the 29th. Kinda nervous"
Oct 21
Dennis Aspö posted photos
Oct 21
Sallie Rebecca Humphreys replied to Rhiannon Lucas's discussion Hey :)
"Hi Rhiannon!  Great to read your introduction - I see you had a pacemaker fitted quite recently.  I had one fitted in 2010 when I was 19, and it really hurt for the first two years - my surgeon said it's because I have such a tiny…"
Oct 21
Becca Evans left a comment for tina saunders
"Hi Tina, You can make a donation via the homepage if you'd like to, just send me a message if you have any difficulty. Thanks, Becca"
Oct 21
Becca Evans left a comment for Tina Saunders
"Hi, You mentioned that you wanted to join because of collection of donations, not quite sure what that means! Hope you're well though and find any support you need here :-) Becca"
Oct 21



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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Having HO and wanting children 8 Replies

Started by Tammy. Last reply by Melissa Brodie Nov 1.

Satisfied with your hands? 1 Reply

Started by Dennis Aspö. Last reply by Becca Evans Oct 21.

Hey :) 2 Replies

Started by Rhiannon Lucas. Last reply by Sallie Rebecca Humphreys Oct 21.


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