Living with Hereditary Spherocytosis: Questions and Concerns

I have hereditary spherocytosis, its pretty mild (diagnosed at 16 or 17, but should have been at birth. my health improved before seeing a hemotologist). I never really understood how to handle this in terms of preventing an episode. Should I change my diet? Avoid blood thinners? When is this information relevant in a medical situation? is it a serious condition? I have so many questions, but nobody in my life has this and sometimes I get a doctor who doesn't know much about it. I've known about it for a few years, but its surprisingly hard to find info on.

Your answer

wellsy

1y ago

Hi there i was born with spyrocytosis. Basically your blood cells are a different shape to most people. Theres are rounds ours are sphere shaped . I had my spleen removed at 1 year old .i truly believe it affects you by the time you get to build a decent immune. As you can immagine i didnt get much and i get real sick in the winter. Its hard as i feel so alone with it . My boyfriend has cancer and hes so lovely and its taken so long to meet someone who thinks simular. Resting up in the winter and like christmas we have both got our families christmas day so we both struggle getting organised but good for ea h other xx

wellsy

1y ago

Yes your imunme is weaker so please try to eat healthy. Drink plenty of water and keep fit . Tiredness is a big thing especially when sick . Im on blood pressure tablets as i do a lot in my life with work but you must get a happy balance . Im ocd which im in control of now and just try to enjoy my life xxx

meggiemay

2y ago

I have HS, had my spleen removed about 17 years ago. My hematologist just recently discovered I have extremely high platelet counts in December. Since then hes run every test under the moon not knowing if its due to my HS and lack of spleen, last week I had a bone marrow biopsy. Has anyone else had this issue?

Roland

2y ago

I've been told my immune system is weaker after my splenectomy which was due to HS but that's it

dryshoulder

2y ago

I have HS. I've never considered or been told to watch any of the things you mentioned. Except reducing salt. Hope to talk with you soon.

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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