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Anyone else feel worse after reading 'support' magazine from Anaphylaxis campaign?(7 Posts)
When DS2 diagnosed with anaphylaxis, I joined the anaphylaxis campaign looking for support and advice and I have found their website useful. However, they send out a magazine every month or so and it always ends up making me feel so much worse about everything! I keep getting to the point where I feel that I'm just about getting things into perspective and feeling calmer about the whole situation, then I receive the magazine and I'm back to square one!
This month's issue had an article in memory of a child who had died even thought his epipen had been administered. I was in floods of tears and am now filled with a whole new terror. I thought the magazine was supposed to help! Is it just because I haven't fully come to terms with the situation that I find the magazine does me more harm than good? Anyone else a member and what do they think?
I have looked at their site but not had the magazine. I do understand how you feel. I had a link on facebook that said similar and it made me feel very anxious.
My DS is 12 and suffered anaphylaxis for the first time nearly a year ago. I am currently taking medication to reduce my anxiety as I am really struggling with it.
How old is your DS, what is his allergy?
I don't get the magazine, but by the sounds of it I don't want to. I'm feeling particularly anxious about DS's allergies at the moment. I have an overwhelming feeling of doom every time I think about it. I couldn't bear to read about DC dying.
I appreciate your upset about the article but sadly it is a reality for that family that their child died. The article was in connection with fundraising as the child's family were raising money for the Anaphylaxis Campaign in memoriam. The AC receives no government funding whatsoever and is a very small charity with limited membership so fundraising is extremely important. The reality is that thankfully there are very few fatalities and even fewer where an epipen has been used correctly.
Can I suggest that you contact the AC directly to express your views as they are organisation set up for anaphylaxis sufferers so they do really want to know your thoughts I am sure.
I am sorry again that you have been so upset
I too read that article and was obviously very upset. My DH said "why do you read that stuff?" but I explained that although I found it very upsetting, I have to accept the fact that it is a reality and that sometimes, very occasionally, people die from anaphylaxis. I understand what you mean shelsco and I guess it does depend on your frame of mind but I think that sometimes we have to remind ourselves why we do what we do and go to such lengths to keep our DC safe. It's not easy looking after someone with life-threatening allergies and there are people who don't understand why we do what we do and think that we're just being over-protective. Maybe we should photocopy the article and show it to those people? I'm quite tempted to make posters of the article and stick them up in nurseries, soft play areas, cafes, restaurants...
I think perhaps you are feeling this way because you are at the begining of the huge learning curve of allergies. It needs some years under your belt to get to grip with the implications of allergy on family life. The stress of it goes up and down quite sharply from our experience.
There was , well certainly for me, a realisation that life will never be as carefree and easy for my son, as for my other three children.
For the early years I hoped for outgrowing, but deep down i knew with the complicated list that magic wands do not really exist.
I see this as part of the acceptance of a situation I cant change, but can prepare him for as part of a normal life.
For me, the campaigns magazine, web site and helpline have meant that I have learnt as much as i can about allergies, so that I am as informed as possible to pass that info on to my son.
Its been a scary roller coaster feeling at times, and I suspect that you will feel the same when a news story of a allergy death appears in a newspaper.
what ever you are feeling today, all of us as parents have been there in one way or another.
I don't know what I think about contacting the Anaphylaxis Campaign and letting them know. I'm pretty sure they will say what you said babybarrister that it is to raise awareness and therefore funds, which I know is valid and they do what they have to do. It just set me back emotionally to where I was after DS was first diagnosed!
Sydlexic my DS is nearly 11 and was diagnosed in November. Initially I felt devastated but then I thought I was coming to terms with it, although I'm still feeling very anxious about it all. I suppose I'm still very early on in the acceptance process from the sounds of what other people with more experience are saying. I'm having panic attacks and do feel a sense of doom when I think about it.
The article would be useful to show people who don't understand how serious it all is, I suppose. The problem is, they don't read it!All the people who get the magazine will have joined the AC and paid the membership fee, so I imagine that they already know the severity of anaphylaxis. Last month's episode had people sharing other experiences which I hadn't considered and didn't want to. (I won't go into detail as I don't want to cause other people the anxiety that I'm moaning about! ) Again, it just increased my anxiety.
Maybe I was expecting a magazine to support when it is mainly to fundraise. I'm just hoping that, at some point, I get to the point where I can read these things and keep some sense of detachment. Like you say eragon I'm at the start of a huge learning curve.
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