Finding online communities for allergy support

Social media and severe allergies

Last week, I got involved in a Twitter discussion on health care, blogging and social media – the regular discussion (#hcsm and #hcsmeu) hosted by Andrew Spong.  I find these discussions interesting but also somewhat perplexing. The ‘perplexing’ part is undoubtedly because the contributors are health policy experts, and the discussion is extremely general.

The ‘interesting’ part – well, I’m the mother of a little girl with severe food allergies and as such have been a rather more active user of health services than I would really wish.  I’m also involved in online engagement and online community design.  I wanted to reflect on my own journey here, as someone who intermittently searches out information and support on allergy.

Our own journey

My daughter is allergic to nuts, eggs, seafood and kiwi, and she has the eczema and asthma that typically go along with these allergies. She was diagnosed 8 years ago, and about every 18 months she has a check-up at our local immunology department. We’re lucky enough to live close to a major teaching hospital, and (when we see them) the staff are brilliant.

Yet. In between, there’s no real support. The essential medical advice is very simple: don’t eat the things that you’re allergic to. Our inititial advice was a long list of things not to eat, a recommendation to join the Anaphylaxis Campaign (good idea), and a prescription for an Epipen Junior.

The detail of how to manage severe food allergy in a non-allergic world has to be worked out by families themselves, and if I’m any guide, that learning takes place in fits and starts, informed by reactions and near-misses. If you were to listen to me as I talk to my child’s headmaster or after-school club about treatment protocols, you might assume I was a health professional. My knowledge of food labelling is prodigious.

I’m not a health professional though, I’m a parent. My daughter has had several nasty reactions recently which required hospital treatment, and in the aftermath of these I went looking for information and support. Here are my thoughts about that search (bearing in mind that I help design online communities for a living).

Comments and thoughts welcome.

General sites

Health sites I’m not aware of any NHS sites. Generic searches for ‘egg allergy’ usually bring up Web MD, or the About pages, full of sensible but deeply generic information.

Parenting communities

One of the Twitter people last week suggested I should be posting to Mumsnet. More than that: she suggested I should be sharing information rather than trying to (selfishly?) search for support.

This, I think, was probably a confusion about my status (most #hcsm contributors are creating content, not accessing it).    But I think it really misses an important point about health searches, which is that they may be situation-driven and highly emotional.

As it turns out, Mumsnet’s allergy board isn’t very helpful for people like me. It’s very drive-by, and the discusssions are dominated by people with young babies. That’s not our stage: I wanted to talk to parents of older children who had been living with allergy for some time, and would understand the issues faced by older children at primary school.

Allergy boards

There are a number of UK allergy forums. AllergyUK is probably the best, although posting is slightly slow – I wouldn’t be confident of getting a reply here. Unlike Mumsnet, the other members seem to include more people who have dealing with allergy over a long period of time.

The Anaphylaxis Campaign has a members-only forum which has very few posts; however, the Anaphylaxis Campaign does feature replies from staff members.  They also have a very responsive helpline.

Then there are the dead or somewhat moribund allergy forums, like AllergyChat (which appears to be British) and Peanut Allergy UK. Some of these sites feel faintly lunatic fringe, to be honest.

North American sites are more lively.

The forum attached to the Canadian magazine site, Allergic Living, is probably the best I’ve found. The design is clear and usable, the forum members are experienced, and there’s a high posting frequency which makes me more confident that if I post, I’ll get a reply. Unfortunately much of the detailed chat about school plans and blood tests just doesn’t apply in the UK. Still, the wealth of knowledge and support here makes it worth considering joining.

Some preliminary conclusions

None of the forums were really all that helpful in the end.  They were definitely much more helpful than the generic health information sites, but because their content is  question-driven, it’s uncertain whether you’ll find what you’re looking for.   (I won’t sign up to a site unless I think they are likely to reply to problems like mine).

In addition, allergy sites are often extremely anxiety-provoking – one American site has a prominent ‘In Memoriam’ feature which, trust me, is not what you want to find when you’re looking for support after a reaction.

Incidentally, the issue that I wanted help with (which was how to deal with my own worry and anxiety about my child’s allergy, and how to deal with her fears) wasn’t really covered anywhere, except within the pages of my favourite American allergy book (see below).

An ideal site would combine a discussion forum with factual information and practical, honest advice on managing allergy (and emotions) in the real world.    The UK charity sites are pretty medically-orientated; they could learn a lot from FAAN’s child and teenager sites, which tackle the emotional side of allergy head on.

Postscript: My favourite resources

The Parents’ Guide To Food Allergies This 2001 US book is far and away the best guide to managing serious allergy that I’ve come across. It’s one of the few to discuss emotional issues issues as well as practical ones, and I still go back and read it every few months.

Allergic Girl This excellent blog is by a young woman with severe allergies, who discusses how to manage a severe food allergy as an enthusiastic foodie.

The US sites run by the Food Allergy and Anaphylaxis Network:
FaanTeen, for example, is aimed at teenagers, yet probably has the best advice on coping with food allergy.

Individual blogs, for recipes or general advice:
Pig In the Kitchen
Nut-free Mom (on Twitter as @nut_freemom)
Foodallergymama has great (US) recipes