COLD autoimmune haemolytic anaemia

Sassaf21
Sassaf21 Online Community Member Posts: 5 Listener
edited May 2023 in Rare, invisible, and undiagnosed conditions
Hi - I have recently been diagnosed with a condition that is relatively uncommon and I don't seem to be able to find any peer group support.  I wondered is aware of any groups for people with COLD autoimmune haemolytic anaemia. 

Comments

  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,538 Championing
    Hi there @Sassaf21 and welcome, thanks for reaching out. I hope you don't mind me moving your post over into our rare conditions category and changing the title, this might make it easier for anyone else living with AIHA to find you. 

    It's not a condition I'm familiar with, but I believe it's do with your immune system attacking healthy red blood cells? How are you finding living with this condition at the moment?

    I'm afraid I'm not aware of any peer support groups, but you're welcome to share your expeirence on the community with other members, as we can all help to support each other :) 
  • Sassaf21
    Sassaf21 Online Community Member Posts: 5 Listener
    Thanks. Appreciate assistance. I'm new to the site.

    You are correct, if I get too cold apparently my body destroys red cells. I ended up acutely anaemic 3 weeks ago and in hospital having blood transfusion and being placed on steroids to suppress the autoimmune reaction,  but during that time I had CT scan which showed a mass on my right lung, which is currently being investigated.    It was a shock to system to discover I now have a lifelong condition I was unaware of.   A week before I did a 15000ft skydive for charity and am generally fit and well, though I'm no Olympian.   It apparently affects around 1 in 300,000 (don't quote me on the number) often over 50 and more women than men. I'm on a steep learning curve.  Hence, looking for peer support to see what others have experienced. 

    I panicked over financial issues such as winter heating.  I have a tight budget and my heating and windows are both very old and inefficient. Currently trying to find grants etc to help with this. I don't know if I will be entitled to anything as I usually work full time and have no benefits.   I am on sick leave whilst having tests and scans.  
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,538 Championing
    @Sassaf21 you're very welcome, thanks for explaining a bit more about it, it's understandable you're on the search for peer support. I appreciate it must be a bit worrying with all these scans and tests, and I'm sure news of this diagnosis will take some time to adjust to. Having support around you makes the journey easier for sure.

    The skydive sounds amazing, how did you feel doing that? :)

    I'd encourage you to have a look at Scope's Disability Energy Support service, who can offer help and advice for anyone worried about the rising costs of energy bills, and how they can best support themselves when budgets are tight.

    If there's anything else you need, please reach out, and I hope you have a good weekend when it comes.
  • Sassaf21
    Sassaf21 Online Community Member Posts: 5 Listener
    Thanks .   The skydive was pretty special. I was part of a team of 9 at work who raised over £5 for Cancer Research UK.    (I wouldn't do it twice though)  :-)
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,538 Championing
    That sounds brilliant, what a team effort! I'm not sure I would be brave enough myself :D
  • Sassaf21
    Sassaf21 Online Community Member Posts: 5 Listener
    Update. Condition under control. Being reviewed under haemotologist every 3 months. No medication required. Got heated gilet for work which helps keep me warm when I have to move between different temperature zones around work.   I was able to get a disability adaptation grant to improve windows and radiators for which I feel blessed. 
    I’ve not come across any peer support group at all for this condition nor could my hospital advise me of one.  There must be other people that have this but I don’t know where they are hiding. 
    Returned all clear on couple of cancer tests but one lung to be reviewed this year.  A few wins here.   I’ve now got to tackle high blood pressure and cholesterol but could be worse. 
  • Sassaf21
    Sassaf21 Online Community Member Posts: 5 Listener
    My latest haematologist seems to think I have had condition since at least 2020 as my GP prescribed iron tablets for anaemia on a number of occasions 
  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,866 Championing
    edited March 2024
    Hello @Sassaf21

    There are some great wins there! I hope you do well with tackling your blood pressure and cholesterol. Has your GP / specialist given advice for that? Keeping everything crossed for your lung review! And I am sorry you haven't found any peer support groups for your condition, but please know the community is here for you! :) I hope you make some great friends here <3 

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