Users comments and reviews on article Hereditary spherocytosis by SirGan
It's good to know that most people who suffer from this will live a normal life because it sounds quite frightening. Is there anyone on the forums who actually suffers from this? I'd like to hear from you if you do becasue I'd like you to share your experience with this. Thanks!
Hi. I have HS. Born in crisis. Transfused immediatley. Splenectomy at age 3. 43 now; immune system always stressed out. Sicker more than others, worse than others, longer than others...but 43!
Does anyone know if this disease can be confused with Rhesus disease? My son was born with rhesus disease and had to have treatment. We have been told that any future pregnancies could result in severe problems. But I have recently learned that HS runs in my family and am wondering if my son was actually suffering from this at birth? Any information would be appreciated.
I have this condition in a mild form and for me it's no big deal. Diagnosed at 7. 34 now and still have my splene. Mildly anaemic most of the time so tend to be a bit pale. No gallstones yet (fingers crossed it will stay that way). Same for my dad who is now 61. Had lots of colds as a kid - can sometimes get hit with bugs a bit longer and harder than other people but generally keep in good health. Only get annual check-ups. Little bit wobbly with it now that I'm 6 months preganant and the pregnancy is exacerbating the anaemia a bit, but still feeling fine and baby is developing well. 1 in 2 chance that the little one will inherit the condition too, but given my experience of it since childhood, I'm not awfully worried.
I am an aboriginal Canadian that has HS and also passed it down to my 4 girls. I didnot know anything about HS until my 2nd child was born.I wasnt told i could pass it down to my children until my last daughter was born. she was very ill when she was born .Tests were done on my other 2 and were confirmed to have HS.They are now adults with children of their own. I have 9 grandchildren and 7 of them carry the gene.It is dominate in my family.I have alot of experience with this condition .I am now in my late forties.
my 5 year old daughter has it. She was diagnosed 2 years ago.She had an aplastic anaimia due ti parvovirus.She is fine now, but I always worry when she gets sick, and I always wonder if she is so cranky because she feels tired, or she is just like that...
Hi, I have Spherocytosis but was told I was a genetic mutation because nobody else in my family (parents or grandparents) have it. My younger sister is a carrier. I had a blood transfusion when I was born and had my spleen removed at 4 yrs. I'm 32 now. I get a physical every year and my blood levels (H&H, RBCs) have been normal since my teens (but were low in childhood). I get tired easier than others but other than that, don't have any problems.
Hello, I was diagnosed with Hereditary spherocytosis when I was 20 years old and had spleen and goal bladder removed at 30. Since then I live a much better life, I am tired more than normal people but much less than before surgery, where I had constant jaundice, paleness and no energy. I would like to get pregnant and wonder what are the chances the baby is going to get it too.
Hi, it's good to know other people have been through this. I was diagnosed at 12, gal bladder removal at 12. 2 blood transfusions every 6 months or so. Got spleen removed at 19 2 months later turned 20 and got married, pregnant. Delivered about 2 weeks after my 21st birthday. I've been having lots of pain in my stomach above my belly button but i'm feeling WAY better than i used to. Not too much tired but i'm making it! :-)
Hi. I have sphero-cytosis. I am 36 and had my spleen removed at age 7. The little I know is that it affects people to greatly differing degrees and this is evident within my own extended family. I have other medical complications but have a full life and enjoy my work and the outdoors. Nice to come across some posts from others who have the condition because I've never met anyone outside of my family with it.
I have spherocytosis. I wasn't diagnosed until I was 17 and met my mother who also has it. I suffered from severe gallbladder attacks from the time I was 10 until I was 20 and one of my doctors finally realized that my excrutiating "back pain" was actually gallstones caused by my hereditary spherocytosis, and I had my gallbladder removed. My condition is mild, I don't find myself more tired than other people really, I just find that I need a little more sleep and get short of breath a little easier. The whites of my eyes are also sometimes yellow. my hematologist doesn't think I'll ever need my spleen removed.
Hi all,
I had my spleen removed due to HS at the age of 10 and am now 56years old. I was never given or have i ever taken any medication for the removal of my spleen or to fight off infection, and over the years my immunity system has improved to such an extent that i would say it is on par with others who have a spleen. Obviously I would not recommend that you stop taking your doctors advice or any drugs they recommend I am just stating my life's experience. I have lived a normal healthy life style and have no problems with lung capacity, in fact it has a high capacity and never suffered with fatigue during the normal working day but tend to lack stamina at the end of a very long day, but is this not normal.
What i would like to know is at what point does the blood and other factors determine when the spleen should be removed or saved and managed. If there is someone out there who can give facts and figures on this i would grateful as my daughter has the same complaint.
regards,
Steve
I had my spleen removed due to HS at the age of 10 and am now 56years old. I was never given or have i ever taken any medication for the removal of my spleen or to fight off infection, and over the years my immunity system has improved to such an extent that i would say it is on par with others who have a spleen. Obviously I would not recommend that you stop taking your doctors advice or any drugs they recommend I am just stating my life's experience. I have lived a normal healthy life style and have no problems with lung capacity, in fact it has a high capacity and never suffered with fatigue during the normal working day but tend to lack stamina at the end of a very long day, but is this not normal.
What i would like to know is at what point does the blood and other factors determine when the spleen should be removed or saved and managed. If there is someone out there who can give facts and figures on this i would grateful as my daughter has the same complaint.
regards,
Steve
Hi My brother (67)had a splenectomy at 7 and two of his three children were diagnosed at birth. I have twins of 39. My daughter has had several miscarriages and a stillbirth. She has never experienced "good health" but has no difficulties getting pregnant. I suppose we're clutching at straws here and she and her partner need to discuss this with her obsteatrician but might she have a mild form of HS and could that harm the foetus ? You'll think I'm daft but we've just made the tenuous link with the family history.
I'm 43 and have HS. I had my spleen removed at 3 1/2 and then had a crisis again at 33 where the doctore found I had an auxiliary spleen that grew onto an artery and functioned as well as my regular spleen would have. I had my gallbladder removed, had the auxiliary spleen removed, got my vaccines to "stay healthy" but the past year I have had a very hard time with catching everything and now have been diagnosed with neuropathy secondary to my HS. Has anyone else ever heard of this? My husband and I have searched the internet for journal articles (he's in the healthcare field) and we can't find anything that supports this other then one article stating lack of oxygen to the nerves can cause damage to them. If anyone else has this problem or has heard of this I would greatly appreciate any info. Thanks