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Rare blood condition

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jane121
jane121 Community member Posts: 4 Listener
in Rare, invisible, and undiagnosed conditions
Hi my partner has a rare blood condition whereby his haemoglobin levels are very low, he has had numerous blood transfusions to increase the levels and I give him a subcutaneous injection once a week of oepotin zeta. He is currently on a research programme at the hospital as they cannot find out why his red blood cells are dying off too early.
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  • Ami2301
    Ami2301 Community member Posts: 7,942 Disability Gamechanger
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    Hi @jane121 welcome to the community! Sorry to hear this, has your partner been tested for Vitanin B-2 Deficiency?
    Disability Gamechanger - 2019
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  • jane121
    jane121 Community member Posts: 4 Listener
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    Yes, he has been tested for everything, he is currently under a top haemotologist at the hospital and they are stumped that he is still walking around with a haemoglobin level of 7.4 hence asking him to be included in a research programme .

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  • jane121
    jane121 Community member Posts: 4 Listener
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    My partner had sepsis in August 2018 which has left him with 16% kidney function, severe weight loss, fatigue with difficulty in walking and doing everyday things, he also has a heart valve problem which he needs an operation but is not fit enough at the moment.
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  • Ami2301
    Ami2301 Community member Posts: 7,942 Disability Gamechanger
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    I hope he receives a diagnosis soon, has he had this since birth or has it started recently?
    Disability Gamechanger - 2019
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  • jane121
    jane121 Community member Posts: 4 Listener
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    He was diagnosed with sepsis 15 years ago and had the same problem with low haemoglobin levels, the consultant at the time said with his levels so low he should be horizontal or in a coma but he was sitting there reading a book!!!
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  • Ami2301
    Ami2301 Community member Posts: 7,942 Disability Gamechanger
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    Blimey! I really hope he gets a diagnosis soon :)
    Disability Gamechanger - 2019
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  • 1119082
    1119082 Posts: 258 Courageous
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    Jane I am sorry to hear about your husband's condition 
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