Does anyone else on here have a child with Hyper IgD?

[MadWitch]

Hi

This site has been recommended to me and I'm trying to find other parent/s with a child/ren with Hyper IgD. My son is 11 and was diagnosed finally last year, following 5 years of abuse from the medical profession!

Please get in touch if you have any knowledge of this condition, mediations, trials, side effects, adulthood etc.

Thanks

Karen

Hi Karen

I don't know anything about Hyper IgD but I'm sure someone on here will be able to help. Please excuse my ignorance but what is it exactly?

bump

Quite basically his joints become inflamed and swollen for no apparent reason, he has a high temperature and his muscles go into spasm. The affected joint to anyone not knowing his condition presents like a fracture; along with his general demeanor! There is nothing that we can find that predetermines an attack!

The only things that I know for certain are that there is no family history (extremely rare given the genetic nature of the condition) and that the condition only presented when I moved to my current home and have an electicity substation in the garden - alas no one will give me any information as to whether this may or may not be the cause. It would be very reasuring to rule it out though!

Madwitch,

Have you come across this Dutch based website on HIDS - this may well help you further:-

hids.net/index_files/basicinformation.htm

Madwitch

HIDS is purely genetic in nature - some scientists in Holland are working on HIDS and the website from them I mentioned will give you more information.

Worldwide around 200 people have HIDS so am unfortunately not surprised you've all been passed around from pillar to post.

Thanks MeerkatsUnite - I have been on that site in the past; but to be honest I'd forgotten about it so the reminder is greatfully accepted. When Stephen was diagnosed we had to have blood tests done in Holland as there is nowhere in the UK that can carry out the test. Must admit even I didn't realise it was that rare!

If its going to be of interest to anyone I can put up more details about the illness and how it affects his day to day life; along with some of the "every mothers worst nightmare" stories that went with finally getting the diagnosis (Oh some of these are non too pleasant - to the point I was terrified to take him to a Doctor or Hospital at one time!)

Thank you again for the welcome to here and especially to Mr Miaou for sending me the link in the first place. People not knowing about his illness doesn't really surprise me - but having somewhere to rant where people understand is the best news I've had re his condition in years!