i have hereditary spherocytosis and would like to contac...

Hi there

I have Hereditory Spherocytosis too. I was diagnosed when I was around 19. I ws usually ill as a child slightly yellow in colour and pale, but no thought any different. it was only when i went to give blood that it was found there was something wrong. Neither of my parents or my brother have the disorder. I had my spleen and gall bladder removed when I was 19. I was put on antibiotics and had a pretty rough time on them. I had to get my tonsils removed too as my imune system couldn't fight of my permanently infected tonsils even with the antibiotics. Since then (I now get the antibiotic injections) I have been pretty good! I'm just careful about running myself down. Whats your story? Oh I'm available on ****

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hi, i know this is 7 years ago, but would either of you be interested in starting dialogue again? Or anyone else for that matter? Hope to hear from someone soon x

Hi i have a 8month old son who has HS he was diagnosed at 4 months old and has had 5 transfusions in the last 4 months. My partner has HS his mother and her father so we knew there was a chance my son would have it. Apart from when his bloods drop he is a very happy baby people often comment on how alert happy and content he is.

We live a fairly healthy lifestyle he is breastfeed and will be until he is at least a year old we eat as healthy as possible buying organic food when possible. My son takes daily vitamins and folic acid to help slow down the need for transfusions.

Look forward to hearing from you soon

Lisa (Dominics mum) age 26

Hi Lisa, glad ur son is well. Just a thought, but I'm now part of a support group on facebook. Would that be any good for you? To find me, i'm Roanne Richardson but you can just find 'hereditary spherocytosis uk'. I found it quite surprising to start with as it seems there are a lot of poorly children out there. I found this upsetting at first but now I just appreciate my well child x.

Hello everyone!

I am looking for advice on a situation involving my brother and my niece. My niece was diagnosed with Hereditory Spherocytosis at 4 months old and has had two blood transfusions. My brother and his wife are planning to fly 10 hours abroad and I am very anxious that she is too young and not strong enough to withstand the flight and may be putting my niece at risk. She is very small, doesn't eat much (weighing 13lb 5oz at ten months old) my friends mum is a nurse and she thinks that they are putting the child at risk. The doctors have assured my brother and his wife that they are safe to fly. However, his first born son ended up having his spleen removed on their last vacation (he has the same condition and at 4 years old they flew abroad when he had a temperature assuming it was just a cold but it turned out to be mono and his spleen almost ruptured) Luckily he survived and all is well with him now. My niece's blood count is under 6 usually (around 5.8) and has the typical symptoms of someone with spherocytosis. I am very anxious about them going abroad again with a baby that will only be 11 months old but I feel like i can't approach the subject with my brother and his wife as they keep telling me the doctors say it is ok. I don't doubt that they have cleared it with the doctors but my instinct is telling me they are crazy for going away with a child that has already had two blood transfusions and has been in and out of hospital since her birth. Their first child was cleared to fly too but the virus escalated quickly.

Am I being over cautious about this? I don't want to offend my brother's judgement but don'f feel comfortable about the situation they are putting my niece in.

Any feedback would appreciated.

From a worried Aunty

Hi I can see this is an old discussion but... Any help would be appreciated

I am 22 from England and have had HS since birth. My brother has it and my mother. My mother was adopted from birth and have recently found her mother. She has not got HS and she does not know who my mothers fathers is, so we are back to square one on knowing where it came from. The only thing we may know is that her father was not from the UK. I have heard that HS does not originate from this part of the world so it would make sense. I was wondering if anyone here has it not from the UK? I have suffered all my life with blood transfusions and my spleen removed. Now I am having a baby of my own and feel determined to find out more about my history! If anyone can help me I'd be really great full!

Hi everyone... i m 28 years old and have diseases like Thalassemia minor, Heriditary spherocytocis, deficiency of Vit-D, having pain at the Coccyx (end point of back bone) and in center of hip bones, having low blood count and high juandice......

At the age of 13,14 i became ill with severe fever and high juandice and after this i oftenly remained sick with fever and juandice and became too weak even couldn't do my studies, work actively... at the age of 19 i went for my cmplt medical checkup and after some blood tests it was known that my blood count was 5.2 with high billirubin, after some more tests Thalasemia Minor and Heriditary spherocytosis were diagnosed. my splenectomy was done due to large spleen. my eyes, face, body remains yellow always as i have juandice all the time with low blood count. after my splenectomy blood count remained stable on 7 for few years but after that it dropped again and again. well i have transfused whole blood 10 times but still i m at 6.8: ( My gallbladder was also removed last year due to having multiple gall stones and a splenecule ( a small piece of spleen or a small spleen.. whatever!!!!) was also removed... This year deficiency of vit-D was diaganosed. But the pain in my coccyx (at end point of the back bone) and at the center of my hip bones is irritating me a lot bcz i can't sit long on any hard surface. so it is quite difficult for me to do my regular activies properly.... I have had all my tests as the doctor suggested like hb electrophoresis, osmotic fragility curve, Hep. B & C, Liver function profile, Kidney Profile, Tc scan, Ct scan, X-ray, MRI and many others but couldn't find treatments!!!!! (( Plz i need guidance.. Can any one help me????????

Hello I'm going thru the exact same thing,

And as of right now I have a huge bad one and it hurts

So bad!!!!!! ;( I know when I have them bad is when,

I feel sick like my body aches I'm so fatigue , does anybody else get a flu like symptom with this bad painful bumps?? I'm so sorry that anybody that's going thru this... But this group kind of makes me feel better because I some times feel I was alone in this.

Wow , i thought i was the only one .... ;( .... wish i had knpw about this 10 years ago... is anybody here ?and would like to help each other pls contact me i think we should support our own self since its rare for is to actually this !

Hi

My son was diagnosed a 6 months ago with spherocytosis after a parvovirus infection at the age of 10. We live in South Africa and there is not much help or information from doctors please I will appreciate any information we have been doing blood tests and the best the red blood count has gotten is 10 my son complains about pain on his stomach and has 6 intestinal infections. Is this normal. He also has pain in his hands with they now say is gout (in a 10year old child). What are all the side effects of this blood disorder