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My Sisters Aplastic Anaemia

Hi. My sister has just been diagnosed with aplastic anaemia. Shes 27 and has a 6 year old daughter. She has always been a hard worker but unfortunately had to stop working due to being so tired all the time. As she has a small child we didn't really think much of it just thought she was over doing it. She started coming out in bruises and unexplained blood spots. After being made to go to the doctors she was sent for a blood test and the same day had doctors knocking on the door telling her she had to go into hospital. She had more bloods taken, 4 transfusions and bone marrow taken for testing. We've been told its aplastic anaemia but hopefully on Tuesday we should get the results on what level she has it. my self and brother are also being tissue tested on Tuesday to see if either of us are a match so we can help. Her platelet levels were 4 when she went in and we know Shes very sick.
We were hoping anyone with any helpful experiences could tell us there stories :)
hannah6860 hannah6860 22-25 1 Response Sep 22, 2012

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Hi HAnnah,

Thank u so much for sharing this start of your journey. I have found myself on this site looking for some positivity and hope. My friends son is at the stage you have described above, he got diagnosed only a week ago so all are still in shock and coming to terms with his illness. If you have time and dont mind answering im wondering what the next stages were for your sister? Fingers crossed Elliot has 4 sisters so please god 1 will be a match.

Please god your little niece has a healthy mummy now or she is well on the way to getting back to normal.

Much love
Britt xx

Hi, thank you for the reply. Me and my sister jo wrote this as she was first diagnosed so was surprised by your comment. Unfortunately neither me or my brother were a match for my sister. She was referred to prof marsh at kings college who did another biopsy and confirmed she had very severe AA. Jo had a lot of problems with anti bodies meaning her platelets would not hold and kept going back down between 1-3 after having them. When jo first went in to hospital after a blood test she was given a positive platelets without an anti d and she was a negative which caused the anti bodies. Jo had a Hickman line inserted ready to start her ATG treatment. Unfortunately she got an infection in this and passed away on the 12/12/12 from septicemia.
I don't want to dash any hopes you have as jos case obviously wasn't very straight forward and we believe the hospital didn't understand her case and made many mistakes.
I would say that the process varies dramatically. Sometimes AA patients are in for the treatment very quickly and some times they are not. It's so important to stick to your guns and if you feel something's not right to speak up. Checking temperature is also very important and if its high get checked out as he may need antibiotics due to his immune system being so low. It can be very frustrating having weekly transfusions and things as you feel like its not getting you any where but unfortunately it's one of them things you have to prepare your self for long time. Another bit of advice would be to get some antiseptic mouthwash, ice lollies as my sister suffered greatly with ulcers in her mouth which can be very uncomfortable but completely normal with low platelets. I really hope he gets a sibling match and starts feeling better soon. If there's any questions you have I'd be happy to help. Remember there are many good endings x