Teenager son diagnosed

[Gunners09]

Hi in February my 17 year old son had a clot in his eye which has left him with reduced sight. We have been told that he has Hughes sydrome. Can't quite get his head around it and was wondering if any other teenagers have it so he can chat it over with them.

[MaryF Administrator]

Hi and a big welcome to you both. My teens both have Hughes Syndrome, (seronegative) and both on Aspirin, however they are not members on here. Are you in the UK and do you have one of our recommended specialists? There are many of us with young relatives affected with the condition and life does improve with a great deal of success and normality once on the correct medication. Also we do have some younger people on here, including some away at University. Best wishes MaryF

[Gunners09 in reply to MaryF]

Hi thanks yes we live in the UK and have been very lucky to have had an appt with professor Hughes and been seen at St Thomas hospital. He just feels very alone and is being told he can't do certain things.

Just feel it would be nice if there was a group that they could all just chat how they are feeling.

[MaryF Administrator in reply to Gunners09]

I am sure some younger members will notice and respond, it is certainly a very good idea that he talks to people his own age, I will also personally keep my eye out for any suitable contacts. Please do also flag up with his consultant at St Thomas's how he is feeling as there may be viable groups or contacts. MaryF

[Manofmendip]

Hello and welcome.

I second everything that my colleague Mary has advised you.

Let us know how he gets on.

Dave

[Hidden]

Hi Gunners09

I've been in touch with a couple of families with teenagers who have APS and I'd be happy to put you in contact with them.

Please email me at the charity: [e-mail]

[MaryF Administrator in reply to Hidden]

Great stuff. Thanks. Was hoping you would spot this one. MaryF