please anyone who can help us my son aged 8 has klinefelters and just 3 weeks ago i was told he has perthes disease

Hello

Sorry to hear of your news, I don’t know much about perthes disease other then what I have just looked up, if I was you I would not worry about Klinefelters so much other than your son may have learning difficulties

With Klinefelters you have all the time in the world to get use to the idea, it’s a bit odd finding out as early as three though, why and how would they know, normally it’s when a boy reaches puberty things are noticed

Concentrate on the perthes disease and make sure he is getting plenty of iron in his diet to help build blood cells and maybe put him on child does of aspirins help to keep the blood flowing, I’m not a doctor so check with your doctor about that

Web definitions

1.Legg–Calvé–Perthes Disease is a childhood hip disorder initiated by a disruption of blood flow to the ball of the femur called the femoral head. Due to the lack of blood flow, the bone dies and stops growing. ...

This may help https://www.tsrhc.org/Perthes-Disease

Perthes disease is not related to being XXY, or having any other condition. Apparently it has an unknown cause, is readily treatable, and although painful will not cause permanent damage. I've never heard of it before, you will probably know more than us. I expect you have already found information about Perthes disease on Patient UK, that's where I got much of mine from.

What other difficulties does your son have related to his genetics, which I presume is XXY?

Hi Fiona,

You may be interested in asking questions in one of several support groups which have appeared on Facebook?

You will find other parents in similar situations and also XXY people who can share their experiences.

Here is one example https://www.facebook.com/groups/109124499125136/

Sorry I do not know much about this condition and it does not seem to be directly related to KS at all. https://patient.info/health/Perthes'-Disease.htm

Feel free to bitch about it if you want to kiss some @

Erm sorry KICK not KISS

I tried to reply to this, but mine had a link to a great Facebook Group that you will get answers from other parents in similar situations, and also us men with KS.

Go on Facebook, and search for "KLINEFELTER SYNDROME" - you'll find loads of groups.

Good luck.

I disagree, I don't think you'll find any parents of XXY boys who also have Perthes disease. It's not a disease associated with XXY or KS, and I've never heard of it before in any other context. It's a brand new disease to me, and I've been studying XXY since I was 17, I'm now 56. It's easy to find all manner of reports on XXY and KS, you'd be amazed with how many diseases are associated with XXY, KS being the symptoms of just 1 of them. So as I've not heard of it being associated with XXY or KS, chances are nobody else has. Your son is unique.

Oh and my page on Facebook is easily the best in the known universe, just search for New Zealand Sex Chromosome Society, which will also be found on Twitter, YouTube, and it's very own web page.

There must be someone out there who has a boy with Perthes disease, and I'm sure you'll track that person down with the right search in the right place.

Hi Fiona,

I have Klinefelters too, I was diagnosed aged 15 (33 now), I've never heard of Perthes disease and its most certainly not connected to KS (or XXY).

Assuming your in the UK, I suggest the best line of support for you is the KSA or Klinefelter Syndrome Association, they are very helpful for parents and boys and run yearly events where parents go to a conference and all the boys get taken on a trip or do outdoor pursuits, all fully supervised of course.

http://www.ksa-uk.net/

I wrote some stuff for BBC Health some years ago via the KSA on the topic, they will be able to offer you support as a parent.

Hi,

Sorry for the delay in approving posts but if it helps there are discussions here https://patient.info/forums/discuss/browse/legg-calve-perthes-disease-1327 about perthes.

Regards,

Alan