Carers UK Forum

Hi,

I'm kind of struggling at the moment caring for my husband. This is partly because his disease is incredibly rare - it's something called IgG4 - an immune mediated inflammatory disease. It can affect any organ, but his is an even rarer case as it affects the tissue in and around his joints. Anyway, while we have a great rheumatology team - it is such a difficult condition to manage and can deteriorate very quickly and so we are at A&E a lot and the GP . I find it so frustrating going over it over and over again with medical professionals who have no idea what it is and the fact there are few treatment options, even in emergency situations.

Does anyone else care for someone with a rare disease?

Welcome to the forum, Jess. I am sorry to hear of your and your husband's situation. I care for my brother, who does not have a rare disease but is 82, bedridden and morbidly obese - apparently common but in practice I can find no community or forum to help and I have difficulty getting advice. Google searches always lead to gastric band surgery and weight loss advice. Anyway, we have a stable situation but every hospital visit risks taking six or seven hours because there will be only one bariatric ambulance in the whole of London. I am also a bit isolated because I gave up my life in Germany after 30 years abroad and came back because my brother can't live alone. However, I can get out quite a lot.

That isn't what I meant to say. I meant to say that when I was living in Germany, after a breast cancer operation I went on cancer rehab and there I met a lady with breast cancer who also had a rare disease. I have forgotten the details but she was one of only 40 in the world and she too lived near the only expert in Germany, in Cologne I think. She was about 60 and was gradually losing her sight and hearing and her sister had to be with her for rehab because she couldn't manage on her own. At that time, in 2009, I did not give much thought to the caring problems. I wish you all the best with your own treatment.

Hi Jess
I used to care for someone with a very rare disease. Unfortunately they are now deceased, I had to carry with me at all times typed information about the disease (there was no official leaflet) and the links to websites and a summary of her history.
At least 5 copies as every medical person seemed not to have read what was in the notes or had been given to the previous person.
If you can get the rheumatolgy consultant to write an open letter that you carry copies of, that may help too.
But be prepared to be disbelieved, disregarded and very very patient. Each doctor will still go through their own checks.
kind regards
MrsA

Not sure if this helps, but when my husband was diagnosed some years ago with a relatively rare form of cancer (not one of the 'biggies'), I found that it was the American forums that were most helpful, simply because there were more people on them - because the US population is so much larger than ours, not because the actual incidence of that form of cancer was greater there.

So I'm wondering whether the similar logic would apply to you in respect of your husband's condition.

One of the problems with forums for rare disorders is that there are so few affected, that the posts can become very 'old' very quickly. For example, a quick search of 'Forums for IgG4' brought up the following:

http://www.medhelp.org/posts/Autoimmune ... ow/2639448?

but the latest dated post I can find is last year.....

I don't know if one way forward might be to try and find other patients via the medical specialists. For example, if you asked your husband's consultant who are the other IgG4 experts in the UK (they will know, as they will attend conferences and such like), and you get their names, then would it be possible for YOU to seek to start a specific patient/carer support group for this rare condition. If you think about it, there must be others in your situation, but because you are so scattered, you don't know who each other is! That said, if the incidence is exceptionally rare, then yes, any kind of 'patient/carer support group' may just be impossible?

But, if you did start a group (it would obviously need an online forum, but they are pretty easy to self-start these days via Google etc etc), then you could have a little leaflet printed, and then give some to your husband's consultant, and then post some more to the other UK specialists, and ask that a copy be given to all the IgG4 patients on their lists, some of whom may then get back in touch with you and 'bingo, you'll have an active support group.

Sorry if this is all 'pie in the sky'.....

I definitely agree with getting a letter from your husband's consultant outlining what is wrong and what treatment he is having, that you can copy and hand out to 'sceptic medics' as necessary!

Such a letter should be in existence already as your husband's consultant will have written back to his GP outlining his findings and his treatment, so maybe the first person to ask for such a letter is his GP, who should provide you with a copy so you can take it with you to A&E, etc etc.

Thank you so much for the input and advice - I'm new here and it's so nice to have some people online who understand!

We do have some very long letters that got sent to the GP. I wanted something a little more concise. Maybe the rheumatologist/rheumatology nurse/GP could give something more like that. As you guys suggest, I'll try that.

My husband has managed to find one support group that had a thread about IgG4 , but it's somewhat defunct . He has at least found some people to talk to about auto immune diseases.

I may look into trying to sort out something myself re: IgG4 support group - that's a good idea

Hi jess my partner also has a autoimmune discease affecting his lungs and because it took so long to diagnose he is now limited to only 12% of his lung capacity he's just had to stop a course of chemotherapy as it's caused him pancreatitus he's had his condition now for 6 years and we are still in the dark really about the outcome of this awful disease would love to chat to you x

Joanne, hi - that does sound grim.

If you post on the Newbie section that's a more 'general' area with a lot more traffic, and also of course do get involved in the Members sections (Roll Call is the site's 'chat' area mostly).

With such rare diseases, it can be that seeking out online support or other carers for this specific condition has to cross the Atlantic. My husband had a relatively rare cancer, and the American sites were more 'active' simply because there were more patients because of the higher population overall, so higher incidence in total numbers.

One of the 'good' things about having a rare disease is that those researching it medically will probably all know each other, even across the world, so will exchange the latest developments - I would urge that it's essential your partner is under the treatment of the leading medic on that particular condition, to ensure that he is in the forefront of new treatments and trials as they emerge from the research labs. Again, being rare, those who are researching and treating it can be very 'enthusiastic' - it's 'their patch' so to speak, and they will be keen to 'prove themselves' by having 'successful patients' etc.

I know it can be very isolating when you think 'Oh, gosh, NO ONE ELSE has this rare condition'.....but thanks to the Internet etc then even the few that do can, potentially, get in touch with each other.

Wishing you all the best possible - Jenny

Thankyou so much joined today haven't got a clue what I'm doing lol , and some really interesting information there cheers xx

Joanne, don't worry, this isn't school!! I'd never used a forum either when I joined, we are a friendly bunch, and our moderators don't bite, they are all either current or former carers too, so you are amongst friends. This version of our forum is very new and is having a few teething problems. If you look at the top of the page you will see it says "Quick Links". Click here, and you will find that there's lots of information you might find useful.