I Have Spherocytosis, Hereditary

Spherocytosis, Hereditary anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Spherocytosis, Hereditary. You're not alone. 30 People

    Me Too

    I have it too. I'm actually surprised that there are others with it. I mean, I knew I wasn't the only one, but I didn't think there were many at all with it. I was VERY unwell from the age of about 3 weeks, had my gallbladder out at age 7, spleen at age 9. Unfortunately, after...
    jmax09 jmax09
    13-15
    Jul 11, 2009

    Never Heard Of This Before The Birth Of My Second Son!

    My second son just turned 6 mos old and it is only in the last month that we have been turned to thinking that his form of hemolytic anemia is spherocytosis.  Even with a transfusion 8 weeks previous, his osmotic fragility test came below normal - despite having additional...
    dnan dnan
    41-45, F
    1 Response May 18, 2010

    I Have Spherocytosis

    I Have Spherocytosis ! I was 12 years old when i was diagnosed with Spherocytosis and I had my spleen and gallbladder removed when i was 14 years old. I'm sure that the medical world has moved on greatly from the days that i spent in hospital with this problem.I have a scar that...
    kscobie kscobie
    36-40
    1 Response Apr 29, 2009

    Curious About Those In My Group!

    Hi- I was born in crisis with hereditary spherocytosis (thanks Dad!); the doctors couldn't wait any longer to remove my spleen due to repeated blood transfusions and anemia, to they took it out and did an exploratory when I was three; that was 1966, so they left a pretty...
    mkstern mkstern
    41-45, F
    Aug 31, 2009

    Never Heard Of This Before The Birth Of My Second Son! Update - Over 3 Years Later

    Please feel free to visit my profile and read my other stories/updates. I also have various pics up for viewing.  My last update was less than 2 months before our third and last child was born, a daughter! She is now 14 months old, and in addition to being the largest baby (10...
    dnan dnan
    41-45, F
    Aug 12, 2013

    My 3 Yr Old Daughter Has Hereditary Spherocytosis

    My 3 and half year old daughter has Hereditary Spherocytosis. A year ago she had a haemoglobin of 9 and now its 6.5 so she has gone from mild to moderate/severe with her condition. The doctor is suggesting she has her spleen removed at 6yrs. She has been at nursery for a year now...
    love1971 love1971
    36-40, F
    Sep 29, 2010

    Living With Hereditary Spherocytosis.

    I was born and raised in Sweden and diagnosed at age 6. I had a splenectomy done at that age. After the surgery I had the Pneumococcal vaccine and back then (1979) they said that it would be enough to have it once in your life time. In my 20s I learned that I should have it every...
    ikafika ikafika
    36-40, F
    Nov 29, 2010

    Living With Spherocytosis

    I was diagnosed not long after birth, it has been a battle since! I experienced continual haemolytic crises throughout childhood, suffered an aplastic crisis from contracting parvovirus B19 which I was very lucky to survive (there was an epidemic in 1998 - my registrars did not...
    Aimeem28 Aimeem28
    26-30, F
    2 Responses Aug 25, 2013

    I Have Spherocytosis.

    I have Hereditary Spherocytosis, I was diagnosed with it when I was a baby. I am now 15. My mom, sister, grandfather, great- grandfather, lots of aunts and uncles and cousins have it. When I was 2 years old I had to have a blood transfusion. My spleen was removed when I was 5, I...
    Critter815 Critter815
    13-15, F
    1 Response Oct 17, 2010

    Curious About Those In My Group!

    Hi- I was born in crisis with hereditary spherocytosis (thanks Dad!); the doctors couldn't wait any longer to remove my spleen due to repeated blood transfusions and anemia, to they took it out and did an exploratory when I was three; that was 1966, so they left a pretty...
    mkstern mkstern
    41-45, F
    Aug 31, 2009

    Newborn Baby With Hereditary Spherocytosis: Looking For Support

    My youngest daughter is 9weeks old. Her elder sister also has HS. Nobody else in our family has it. Both are sever cases. My eldest was diagnosed at 11months and had a splenectomy at age 3. HB never got over 6.8. My newborn was diagnosed at 3weeks with a current HB of 4.9. She...
    Specialj233 Specialj233
    31-35
    3 Responses Dec 6, 2012

    hi. I am a mom of 3 hs children.

    The oldest of them is 12 and is looking for any teens with hs to talk/email/text to especially if they are jaundiced like she is. If your child also has Hs and you want a buddy for them to talk to please message me. Thanks
    alliecassarriana alliecassarriana
    36-40, F
    May 6, 2014

    Me and My Daughter Both Have Spherocytosis

    I was diagnosed with spherocytosis when I was about 9yrs old and am now 30.  When I was 25 I gave birth to my beautiful baby girl who was diagnosed at birth with this disorder.  I have been struggling for it seems like years to find out more about this disorder and what...
    Eliemy Eliemy
    26-30
    9 Responses Jul 18, 2009

    My Daughter Was Diagnosed With Hereditary Spherocytosis 4 Mos Ago

    My daughter is 5 yrs old.  She was diagnosed with hereditary spherocytosis about 4 mos ago, after a hemolytic crisis, requiring two transfusions.  She then had her gallbladder removed the next month, then another two transfusions 6 wks later.  They have vacinated...
    boots6376 boots6376
    36-40
    1 Response Aug 19, 2010

    Never Heard Of This Before The Birth Of My Second Son! Update - 2 Years Later

    My husband and I are literally coming up for air after a rather rollercoaster 2.5 years since our second son was born. If you check our my profile, you can see my first posting on this which pretty much covers the first six months of our son's life, plus I have uploaded some pics...
    dnan dnan
    41-45, F
    7 Responses Apr 9, 2012

    Living With Hereditary Spherocytosis

    I was born with Hereditary Spherocytosis and have delt with it all of my life. My Mom also has HS, but not as severe. At age 3, I had a Spleenectomy due to a super enlarged Spleen. In my first 10 years of life, I also had several siezures, several ear surgeries, many blood...
    Jason120 Jason120
    36-40, M
    1 Response Mar 16, 2011

    Spherocytosis

    Hi. Im 22 and never had my spleen removed. Ive alway dealt with low energy and yellowish shin and eyes. But the biggiest issue I've been experiencing is sever pain, that fills like it is coming from my bones in my legs and arms. It bothers most at night and after long day. I was...
    Joegodfrey21 Joegodfrey21
    26-30, M
    1 Response Aug 14, 2013

    Living With Hereditary Spherocytosis.

    I was born and raised in Sweden and diagnosed at age 6. I had a splenectomy done at that age. After the surgery I had the Pneumococcal vaccine and back then (1979) they said that it would be enough to have it once in your life time. In my 20s I learned that I should have it every...
    ikafika ikafika
    36-40, F
    1 Response Nov 29, 2010

    Post Splenectomy Penicillin - Who Needs It?

    I was diagnosed with HS after a crisis at fifteen and had my spleen out at sixteen (with a 30 cm scar to show for it!) At 28 I was told I needed to be on penicillin for the rest of my life. It made me feel sick, ruined my digestive system and did not stop me catching every cold...
    allmandy allmandy
    41-45
    1 Response Feb 8, 2011

    Looking For Support For My Son

    He is three. He was born with HS. Had his spleen removed at 13 months. How do you prevent fevers? What's effective for you?
    MrsMinneapolis MrsMinneapolis
    26-30
    4 Responses Jun 27, 2012

    Starting To Realize The Seriousness Of The Disease

    I am 31 years old and i was diagnosed with hs ar 10. I always seemed to have a yellow hue to my eyes and sometimes my skin, this would be worst at times than others. My spleen was enlarged but i was not always cautious of it. I enjoyed playing hockey with my older brother. I have...
    jacsy4 jacsy4
    31-35, F
    Dec 31, 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
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