Daniel Copeland – Living with TAR Syndrome
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Daniel Copeland – Living with TAR Syndrome

My name is Daniel Copeland from the UK and my group is TAR syndrome which is short for Thrombocytopenia with Absent radii. Thrombocytopenia is low platelet counts, so you bruise and bleed easily, bleed for longer, get ill easily, and things like that. So, with the absent radii. There are two bones in your arm, the radius and ulna and we don’t have a radius. Our wrists are turned in. So its a bit similar to a looking like Thalidomider But it’s a very rare syndrome It hasn’t been around for very long I was the 18th person born in Britain with it. It was good. I had a lot of supports. The school I went to was a mainstream school but had a high value for disabled children. And to integrate them into social streams. You know to encourage them not to be separate and to be included as much as possible. We run a family support group which is especially for new cases and when the children are small. To educate them, to help just make things easier growing up and to have as much information on everything really. Because we’re such a small group its hard for us to gain information on, I don’t know, just things on a bigger scale. about how to run things better and how to help as many people with it as possible. To reach out to people to who may have the syndrome but don’t really know that there is support there. Just to share information and things like that I think is important for us to join a bit more of a community. Not only so we can learn about ourselves but so we can learn about other forms of dysmelia as well.

12 thoughts on “Daniel Copeland – Living with TAR Syndrome

  1. Hi RecklessDreamer90,
    Thanks for the comment, Dan told us TAR syndrome was pretty rare, so its nice to hear from you.
    Join our international DysNet community on RareConnect where you can read more about Dan and meet others:

  2. This is so lovely to see that you are helping support others with TAR, I gave birth to a daughter in January who had TAR Syndrome and even rarer was not inherited from myself and my partner, unfortunately she was born to early bit I know this type of group would have been something we would have been looking for!

  3. Hey Dan, I'm a 40 y/o Aussie with TAR and have travelled the world (backpacking and in style) and have met many families around the world with TAR. I've only met one other in Australia an older gent than me. If you're ever in Oz look me up.

  4. I live in Milwaukee, WI and I live with TAR everyday. The people who are commenting with this video, we aren't different. We are the lucky 1 in 500,000 that are born with this gift.

  5. my name is Sherry and I have TAR syndrome. im 45 and been living on my own for 27 years. it is so nice to see someone else who has it. I would love to interact with other people with TAR. you are brave and wonderful!!

  6. my daughter was born with this gift,let 9 years ago. she has taught me so much and I hope she will teach others as she grows and becomes a successful beautiful woman.

  7. Hi , I am from the country of kuwait. My small brother has TAR syndrome. It's great seeing support groups for cases like his . I wish you all the best!

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