Brittle ashma

My Daughter has brittle asthma which started when she was 18 she is now 21. Her attacks are now so severe that she is in hospital usually one a month and has been resuscitated twice this year. She is a very positive person who was a great sports women. I am worried about her future, what jobs she would be able to do with this condition and also that she will die. I have to keep all these feelings to myself as she is such a positive person and acts like she doesnt have a problem which in itself is a worry but I know that, that's how she copes with it which is a good thing. She doesn't always let me know if she is in hospital and recently she was airlifted to hospital when she was at home during the holidays. Nobody told us and I ended up driving round the town trying to find her before calling into our local hospital who rang round for me to find out where she was. Is there any hope for people with this condition when it is so severe. I would welcome any advice from anyone who is living with this or who is a relative or Mother of someone who is living with this condition.

3 Replies

  • Hi, very sorry to hear about your situation.

    I have asthma, at times it can be very debilitating and I often wonder how on earth I manage. I am a musician, a teacher and a mother to a lively 2 year old. I often wonder if I'm in the right job as, having to be active and talk/sing all day can be exhausting especially when the asthma is bad. The thing is, I love my job and being a mummy, so in all seriousness I would rather not be around if I wasn't able to keep doing what I love. My point is that if you have a plan and good support then most jobs are open to you, Does your daughter see a specialist? What medication is she on? Does she have any plans for the future? Obviously it sounds like her asthma isn't under control. I used to pretend I didn't have asthma and it resulted in some tough attacks and weeks of medication. I also never used to tell my mum if I was taken to A and E unless I couldn't hide it. It seems silly now but facing up to the disease is, I think, one of the best ways of preventing serious attacks. There is no shame in admitting you have asthma. Knowing your limits and when to seek help is key. For me it was my doctor spelling it out for me that made me realize that I wanted to be around for my little girl so I took notice. If you are struggling then maybe sitting down and having a chat with your daughter over your concerns would be a good idea?

    I hope some of this has helped. Happy to try and answer any other questions :)


  • Hi, was just reading your situation but I was wondering does she have Allergic rhinitis? because that's the root of most flare ups start, admittingly this year it took me by surprise as the pollen/warm weather came early and I had been very ill for the past 4 weeks.(only just starting to recover)

    My Asthma nurse pointed out getting that under control will reduce the risks of any serious attacks and I've been taking Loratadine and Avamys for nearly a week now and noticed an improvement.

    Hope this helps and all the best

  • Hello!

    I too have brittle asthma and have worried my Mother a few times. I see a specialist at my local though in the past they have consulted the Brompton.

    I am 45 and was diagnosed with Brittle type one and the two as well when I was 23-24.

    Sounds like your daughter has type two, severe attacks but otherwise well ish in between?

    One attack a month sounds a bit like Hormones could be involved... it can cause severe attacks once a month. Mine isn't hormone related, though being on a high dose of steroids and PMT is not much fun!

    I do get on with life the best I can, it can vary so much for many people. I have friends who are able to live a reasonable life.

    I have lots of side effects from the steroids which have caused me mobility problems. I have symptoms daily but... touch wood, no admission since December 2013...

    Taking control of your asthma, medication wise and the way you live is one way to help with symptoms.

    She may be hiding much of it and in denial too ... she sounds like she was very fit - sports wise etc.

    Jobs, she should be able to do what she wants, though there are some limitations on certain jobs like the armed forces or environments where she may be exposed to allergens.

    I work part time for a Wildlife trust... which is great but at the moment our HQ has a lot of flowering rape in the fields on the farm...

    Is she under the care of a specialist centre or are the local specialists helping?

    Whatever she does, she needs to understand her condition to live with it, be in charge of it and not letting it rule her... very difficult at times as I know to my cost!


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