Holt-Oram

For people affected by HOS

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

Latest Activity

Lindsey updated their profile
Friday
Geraldine Lane is now a member of Holt-Oram
Friday
Becca Evans replied to Becca Evans's discussion Membership to the site
"I just heard back from Ning. It looks like we can continue with our existing rate of $239.90 so we have enough for another year! Thank you all so much! The extra money will stay in the account for next year xx"
Friday
Becca Evans replied to Becca Evans's discussion Membership to the site
"We now have $295.40 in our account. Ning have changed their pricing plans and I can only seem to access them in £! The new plan is £18 a month which I think is approximately $338.56 for the year. I have emailed them a couple of times to…"
Nov 20
Becca Evans replied to Becca Evans's discussion Membership to the site
"Another incredibly generous $100 donation! I am officially overwhelmed! Thank you so much everyone. Your donations make this website possible :-)"
Nov 20
Becca Evans replied to Becca Evans's discussion Membership to the site
"Another 3 donations have come in, totalling $35! Thank you so much for your generosity! My dream is to make this group a registered charity but in order to do that in England you have to have a bank account with £5000 in! I'd love to be…"
Nov 20
Lindsey and Eric R Gumulak are now friends
Nov 20
Tim updated their profile
Nov 20
Tim replied to Becca Evans's discussion Membership to the site
"I am so glad you are getting donations! I will try to donate something this weekend or early next week. I also plan on being more active here than I have been. "
Nov 20
Becca Evans commented on Preston Michael's blog post hello
"Thank you so much for the hugely generous donation and for sharing your story :-). I hope that one day we can become a registered charity and offer grants to people with HOS for adaptations etc to help them to reach their potential. Donations like…"
Nov 19
Becca Evans replied to Becca Evans's discussion Membership to the site
"Thank you for the really generous donation of $100 that someone just made!"
Nov 19
Preston Michael posted a blog post

hello

Hello everyone!  This is my first post ever on this forum.  I have been an occasional lurker for a couple years.  I was born with HOS and grew up to become a Airline Pilot for one of the largest Airlines in the US.  My wife and I have one son (18 months old) with one more baby on the way (due in Jan).  My son is HOS free and so far all indications are the second one will be too.  My wife and I made the decision to do pre genetic testing and IVF to reduce risk.  This is a very personal decision…See More
Nov 19
Becca Evans replied to Becca Evans's discussion Membership to the site
"Thank you to the three people who have donated a total of $14 today :-)"
Nov 19
Preston Michael updated their profile
Nov 19
Becca Evans replied to Becca Evans's discussion Membership to the site
"Just bumping this discussion back up as the payment is due on the 27th of this month! Thanks, Becca"
Nov 19
Becca Evans left a comment for Tiffany La Chance
"Congratulations and Good luck! I'd love to see some photos! Xx"
Nov 19

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

Membership to the site 25 Replies

Started by Becca Evans. Last reply by Becca Evans on Friday.

using genetic testing to have a non-HOS effected baby--our story 6 Replies

Started by Katie Gano. Last reply by Felicia Love Nov 17.

I'm considering having a child 2 Replies

Started by Felicia Love. Last reply by Felicia Love Nov 17.

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