Holt-Oram

For people affected by HOS

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

Latest Activity

lisa mccann replied to Lisa Koss's discussion No Policization???
"Hello Lisa, I cannot tell you what to do - I'm sure no1 can, but I can  tell you my little guys story. I do not have HOS but my son, Alexander, has -  we are struggling with very similar issue as you. He is 2 this Saturday and was due…"
15 hours ago
Lisa Koss posted a discussion

No Policization???

We were supposed to have my daughters first Policization surgery May 4th.  It was canceled because of an ear infection...which naturally forced me to reconsider our decision to have the surgery at all.  It is not easy to make a decision for your daughter that you yourself have no experience with.  I want to do right by her and what will benefit her.  BUT - she is 10 months old and so far there is NOTHING she cannot do - or grab - or pick up..she just does it.  It amazes me!  My question is for…See More
Tuesday
Tania from DysNet posted a blog post

Introducing DysNet - the new network for people with limb differences

We've just launched today with a new website at http://www.dysnet.org and a moderated RareConnect  community at http://www.rareconnect.org/en/community/dysnetPlease do join! At the website you can find research articles and contribute your own knowledge in the form of documents, leaflets you may have found, links that are useful. At RareConnect, run by EURORDIS and NORD, the world's…See More
Monday
Judah Brewer posted a discussion

Considering pollicization?

Hello all,We are new to the group with our 18 month old sweet boy, Judah! We are in the research phase of looking into surgical options for his hands (four fingers with no thumb on right and three fingers with an immobile thumb on left) and would love to talk to people who have "been there, done that" with themselves or their kids. Judah has great fine motor skills without surgical intervention so we are beginning to lean toward no surgical intervention (although we anticipated this procedure…See More
Monday

Stacey Jordan just added their location.
(via Member Map)

Sunday
Monica McGarry replied to Becca Lane's discussion Membership to the site
"Becca, I would like to give more than 2 dollars, but I don't know how to change the sum on the page I get when clicking on "donate". When I go to "PayPal" direct they want your E-mail....... Any suggestion? Monica"
May 2
Becca Lane posted a discussion

Membership to the site

We currently have £46.09 in our paypal account to go towards the website subscription for November 2012 - November 2013.  The fee for the year currently looks like it will be £169.95 so we will need more before November.  We currently have 168 members so if everyone gave £1 we would have more than enough.  The donations are set up in dollars as it makes it easier to pay Ning and as we have lots of members from all over the world!Sorry to start the nagging so early, I'm worried I'll reach…See More
May 1
Judah Brewer is now a member of Holt-Oram
Apr 27
Becca Lane replied to Becca Lane's discussion Raynaud's Syndrome
"Just to try to keep warm and wear big socks! B xx"
Apr 27
Monica McGarry replied to Becca Lane's discussion Raynaud's Syndrome
"Hi Becca, I don't have that problem, but one of my children does. Reading on this site about small bloodvessels I'm not surprised that some of us have that problem. Did your doctor give any advise? Monica "
Apr 27
Becca Lane posted a discussion

Raynaud's Syndrome

Hello all,I went to the dr today as my toes had gone blue, he said he thinks I have Raynaud's syndrome, after speaking to Sallie and Emma (also members of this group) it turns out they have it too and I just wondered if it's something we all have in common?B xxSee More
Apr 26
Profile IconVal Gillon and Tania from DysNet joined Holt-Oram
Apr 26

Kelly just added their location.
(via Member Map)

Apr 25
Kelly updated their profile
Apr 25
Kelly left a comment for Becca Lane
"Hi Becca, Thought I'd join this site as it seemed interesting. and I'm from Plymouth :) Looks like a great site. I have holt-oram myself (probably obvious :P). I've never come across anyone else with it so this is new :) Take…"
Apr 24
Becca Lane left a comment for Kelly
"Hi Kelly, How are you?  Someone from Devon?  That's exciting, so nearby! Becca"
Apr 24

Members

 

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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Forum

No Policization??? 1 Reply

Started by Lisa Koss. Last reply by lisa mccann 15 hours ago.

Considering pollicization?

Started by Judah Brewer on Monday.

Membership to the site 1 Reply

Started by Becca Lane. Last reply by Monica McGarry May 2.

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