I Have Hereditary Spherocytosis

A Hereditary Spherocytosis anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Hereditary Spherocytosis. You're not alone. 51 People


    Well Hollie is 4now and had her heart operation in June ,her spleen is very large now and we have appointment to see the surgeon at Manchester children's hospital next Wednesday so she will be given a date to remove spleen gallbladder and appendix -very worrying On a lighter note...
    Worriedmum12 Worriedmum12
    Nov 14, 2013

    I Have Hs

    I had my gallbladder and spleen removed when I was 6 or 7. My parents never really understood why I had to have it done. After the birth of my first daughter, she was diagnosed with HS and then I began to understand what I had. Six of my eight children have HS and so does my...
    Bobbw8 Bobbw8
    41-45, F
    1 Response Apr 23, 2012

    I was born with Hereditary Spherocytosis,

    I had my spleen removed when I was just 4 years old. I had to get my spleen removed lapriscopically and by cesarean because my spleen was so big. I am now currently 16 years old and doing the Research Project and my question is "to what extent does Congenital Spherocytic Anemia...
    RyanMilton RyanMilton
    18-21, M
    1 Response Apr 29, 2015

    I am 62 years old with HS.

    I was not diagnosed until my mid 40's when my daughter was diagnosed resulting in my wife and I being tested and bingo! I have it. I was never placed under any management plan, just told by my GP to take Folic Acid 5 mg once a day which I did. The condition answered many things...
    denny7279 denny7279
    61-65, M
    Dec 25, 2015


    My granddaughter has hs she is 3: and had 6 transfusions already, last week dr told us they are concerned at her heart murmur as it is very loud so we've now been referred to cardiologist, her spleen is measuring at 7cm nd she says pain in her hip , h/ b is 7.2 at the moment so...
    Worriedmum12 Worriedmum12
    3 Responses Sep 23, 2012

    Hs...it What It Is

    My grandfather has HS, passed it to my father who passed to me and I in turn passed it to one of my 3 kids. My dauther is the most severe case in our family. At age 5, a routine ultrasound of her spleen showed "sludge" in her gallbladder. Doctors decided to perform...
    hatmadns hatmadns
    41-45, F
    5 Responses Nov 14, 2009

    Hereditary Spherocytosis

    I'm 22 living with hs i was diagnosed   with it when i was younger i had a blood transfusion when i was younger and had my spleen and gallbladder removed when i was 7. I was great after that till about 7 months ago when i was told i had an enalrged thymus...
    gotengk5 gotengk5
    4 Responses Jul 26, 2010


    My boyfriend has Spherocytosis. He has had the splenectomy when he was younger, so he is fine now. It is a moderate form but it almost killed him. Thank God they caught it in time. In my literature class we have to do a research paper. I decided to do mine on Spherocytosis to...
    jesskate93 jesskate93
    18-21, F
    2 Responses Dec 6, 2010

    Keeping Healthy With Hs

    I am 38 years old and a mother of 2. I lived most of my childhood sick, in and out of hospitals and no one could diagnose what I had. When I as 10, I went in to the ER one night with bad pain due to gallstones and was finally diagnosed. At that point, my hemoglobin was down to 2...
    Aperdomo Aperdomo
    36-40, F
    2 Responses Sep 4, 2012

    My Daughter Has Hereditary Spherocytosis

    My daughter has hereditary spherocytosis i found out she had it when she was 1 1/2 she had alot of blood transfusions about one every month then at the age of 2 she had her spleen remove because her iron was getting to high now any fever she gets she has to stay in the hospital...
    marialang marialang
    May 15, 2011

    My 8 Year Old Son

    My 8 year old son was diagonsed with hereditary spherocytosis this weekend. He had some complications and was jaundice and slightly dehydrated and we were informed he had an enlarged spleen. This is his first complication, but we were told he is considered moderate to severe. We...
    kbywall kbywall
    36-40, F
    4 Responses Jan 17, 2013

    Living With Hereditarty Sphereocytosis.

    I was diagnosed with Hs soon  after birth. Had my spleen removed at age 5, gallbladder at age 18. I live with a hemoglobin of 9 or 10, a bilirubin level of 5.0. Fortunately I was blessed with 5  healthy children. I feel inspired by stories of others who live with this...
    puiknsko06 puiknsko06
    1 Response May 24, 2010

    Three Children With Spherocytosis

    I was only diagnosed with HS at 28 when my first daughter was born and was Jaundiced. I'd been a very sickly child and was constantly reminded of my constant screaming as a baby which I now put down to possible HS related symptoms. I would suffer shortness of breath when doing...
    SpencerDomingo SpencerDomingo
    41-45, M
    1 Response Jan 21, 2010

    Hereditary Spherocytosis

    Every one in my family has it  ,that is  my brother , sister , myself  WE all had spleen & gallbladder removedMy mother, my aunt & their 2 brothers  they all had spleen & gallbladder removedMothers 2 aunt  1 uncle & father (my grandfather}My grandfathers  mother all...
    g45663336 g45663336
    61-65, M
    Feb 15, 2012

    My son has been investigated

    for hemolytic anemia since his birth. It is very severe. He receives a transfusion every month and it started at 3 weeks old. He's tested negative for everything so far, but because of frequent transfusions, there are disorders that can't be ruled out. HS is the current front...
    islandmommy islandmommy
    36-40, F
    May 12, 2014

    Pneumonia And Those With Hs (mom Looking For Answers)

    Hello, I am the mom of a 4 year old that has spherosytosis. Although both my husband and I were tested, it appears neither of us have it. My son was diagnosed at 2 years old. Since then my son has had 6 bouts of pneumonia, most recently double pneumonia, positive RSV test which...
    mojruza mojruza
    2 Responses Feb 24, 2012

    Hereditary Spherocytosis

    I am a 32 year old mother of 2.  I was diagnosed with HS short after birth.  I had 2 blood transfusions short after birth. I had my spleen removed when I was 6. My daughter is now 4 and does not have HS at all.  My son is almost 2 and was diagnosed with HS about 5 days after...
    jseli jseli
    Jan 11, 2011

    Looking After My Daughter Who Has Hireditary Spherocytosis

    I'm a 21 year old monther with an 18month old daughter who has hireditary spherocytosis, we found out when my daughter was 2days old she had it and came abit of a shock to the system as it doesn't run in either side of the family so its spontanious in her. when she was 3months...
    emmashelby emmashelby
    3 Responses Nov 25, 2010

    Help! I have HS and I'm one of the fortunate

    ones, with very little problems. I had a blood transfusion when I was diagnosed as a child and was put on daily folic acid. I have some jaundice and fatigue at times. My spleen was NEVER removed even 2 years ago when I had to have my gallbladder removed they told me to keep my...
    Staceym16 Staceym16
    26-30, F
    Mar 16, 2016

    I Have Hs

    I'm new on here and too have HS. I was diagnosed at 6 weeks old and had my spleen and gall bladder removed at age 11. I have two children, who have thankfully not inherited HS. I do feel that I am constantly exhausted. Does anyone else have this problem? I've not had a blood...
    cpp1 cpp1
    31-35, F
    4 Responses Jul 23, 2011

    I Have Spherocytosis And Am Struggling For Answers And Good Medical Guidance.

    I've been on my death bed more times than I can count. My mother called me her miracle baby because of my horrific, repeated brushes with death. First they assumed I had Leukemia at age 5. At seven, I had a fever of 104 and became delirious. I had my first emergency blood...
    nikkime nikkime
    2 Responses Apr 13, 2012

    In The Family

    I have HS along with my mum, sister and her two girls and one of my mum's brothers.  My two daughters also have it.  My mum and sister have both had their spleens and gall bladders removed.  I had my GB taken out six weeks after the birth of my 2nd daughter but still have my...
    allisonstephens75 allisonstephens75
    5 Responses Feb 23, 2012


    I Was diagnosed with HS when I was 5 after many tests trying to figure out what was wrong. I am now 30 and seriously contemplating having my spleen removed. I have lived a normal life but have been in hospital more than most over the years. I get sick easily and often due to...
    Mazb81 Mazb81
    2 Responses Apr 18, 2011

    I was diagnosed with HS

    when I was about 3 months old. I started having blood transfusions soon after. I became very ill and after each blood transfusion I would get a little better but would go downhill fast. After several of the transfusions they surgically put a port in me so that they could more...
    KathrynRobyn KathrynRobyn
    22-25, F
    Aug 21, 2014

    Hs In Australia?

    Hi all. I'm a 38 year old mother of 2. I was diagnosed with HS at 2 with no signs of either of my parents having the disorder. I had my spleen removed at 8 after numerous stints in hospital and about 5 blood transfusions. My childhood was characterised by sickness. I took...
    Mandajg Mandajg
    36-40, F
    2 Responses Aug 30, 2012

    I was diagnosed with HS

    when I was in the first grade. I had to be rushed to a hospital 2 hrs away from where I live to get a blood transfusion. I'm now almost 19 and have to travel 2 hrs to the same hospital to see a specialist and get blood work every year. In 2011 I had to get my gallbladder removed...
    sarahsmile96 sarahsmile96
    18-21, F
    1 Response Apr 17, 2015

    I have HS. I had 1 blood transfusion

    when I was just 4 years old. I was able to keep my spleen until the age of 15 when they took out my spleen and gallbladder. I had a son at age 17, who was also diagnosed with HS at 48 hours old. He had his first blood transfusion at 25 days old. He had several more spread out...
    LeaE08 LeaE08
    26-30, F
    Apr 12, 2014

    I was diagnosed with Type 1 Diabetes at the age

    of 13 & my Doctors suspected that I had Spherocytosis, it took several months to get it at the right stage and my Spleen was then removed. The only problems I have with Spherocytosis is becoming Anemic a few times a year, it does throw my Blood Sugar off a bit in that time-frame...
    davidmuhn davidmuhn
    46-50, M
    Oct 13, 2014
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