My grandma had her spleen removed when she was in her 20’s. She just passed away at the age of 88. My whole family has H.S. and honestly we’re all doing just fine without spleens.
i am so happy to have found this video. i myself have hereditary spherocytosis. ironically, my dr was Dr. Donna Dimicheli when she use to work at the Children's Memorial hospit out in Chicago. for years my mom took me from dr to dr. til a neighbor took me to her dr's office and right away he knew there was something wrong with my spleen. i went to the hospital dec 28th. met with Dr. Dimichelli and theu scheduled my appointment for jan 3rd. years later, i now have 2 kids, one also with h.s. i would love to get back on contact with my old dr. she saved my life. bravo!!!
I need you help myself hereditsry spherocytosis....what i am doing i dont know please you suggested me... My slpeen size 16.8 my fathar check up me with doctor to doctor... But there are no benfet in my life.... Please you can suggested me what am i do....??? Please
@@abdurrazzak5656I have hereditary spherocytosis too. Same as you, I don't even know what to do. Did you found any treatment. And also where are you from. Maybe we can benefit ourselves by sharing our experiences
Wow. Thank you for this video. All these years, I felt so misinformed with my own condition and my doctor never had explained to me this way. All I knew is that I got a large spleen because I have the same condition as my father. So, when someone asks me my health condition, I just say enlarged spleen and it makes me anemic and has yellowish eyes. I never thought this is what it actually is.
My family has H.S. I had my spleen removed at 5 years old, all my brothers and nephews have it and had spleens removed. If you have H.S make sure you get a pneumococcal vaccine regularly.
My 2 brothers had HS and both died. The oldest died at the age of 3 and did not take any medications except for blood transfusion for a reason that there is no medication for the past years. Our youngest died at the age of 9 and got all the medications, removed his spleens but then did not survive.
My daughter has this ..only reason i was knowledgeable about it was because her dad has it...but if i didnt my baby might not be here...doctors couldnt figure out why her bilirubin was so high....i thought about when her dad had an episode. And brought that up as a possibility..but her level was at 17..21 u r considered brain dead...thank god she recieved a transfusion and now 10 yrs later shes a wonderful girl
I am just wondering how is Ezra now after 12 years from this video was done? I hope and pray Ezra is doing much better now with the partial splenectomy that was done 12 years ago.
Some insight from Germany here: I had a partial splenectomy and removal of gallbladder when I was 11 years old. I'm now 37 years old and I'm doing quite fine. I'm exhausted two/three times per month - mentally and physically. I tend to get sick more often with flu-like infections. Since I have an office job, it's not a burden.
I have HS, diagnosed when I was 15, I'm 55 now. I had a splenectomy with an accessory spleen and gallbladder removal. No lasting effects, other than keeping an eye on immune system if I get sick. As far as I know, I am the only member of my family to be diagnosed and symptomatic. Since it's hereditary, I find that unusual
Omg my 6 year old son has it and neither me nor his dad has it…we’ve checked with other family members and no one. I’m confused as to how he has it. He’s had 4 blood transfusions he’s first 4months of life…I’m keeping my fingers crossed with this
@@phyllisjohnson4081 Mine started at birth but it took them till I was 15 to figure it out. I too had multi blood transfusions at birth. This was in '65 so they wanted to do exploratory surgery while I was still a newborn, pop said no thank goodness.
my son to was born with hereditary spherocytosis I know what you're going through he has has eight blood transfusions and a major operation to remove his spleen he sees specialist quite often so my prayers go out to you son and your family
I have hereditary spherocytosis, also my sister and our mother has it, my mother's father had it. My sister has had her spleen removed when she was in her early teens, she is 46 now and i am 44, i still have my spleen, i have suffered all my life with this disease, it me physically! some mornings i wake up fine, and have enough energy to get on with my day without it effecting me at all, but some mornings i wake up and i feel drained, then i find it hard to get motivated, no matter how much i want to do somthing, i phsyically find it very difficult, its wierd, what dosn't help me is the fact that i had a motorbike accident when i was 15 and severed an archery in my leg, so i was given blood but the blood they gave me contained antibodies, mainly anti k, so i that also contributes to my problem. When i was in my teens and right throught to when i was about 35, i used to go yellow on a regular basis, now im in my 40's and i have learnt what not to do i can control it better but i still occassionly go yellow. It's been a long hard life for me, if i am honest about it, having a lack of energy and motivation, and people being quick to judge are probably the two main downfalls of this disease i found. It's not nice being yellow, everyone looks at you, and some people make assumptions!!
Hi @KG Lang, i have the same condition, was detected at the age of 4. since thn I have had low blood count but it was only after 14 that i was diagnosed with pigment gall stones, so i had to get my gallbladder removed too. now i face the exact same problem, going yellow!! my eyes get super yellow too. my friends make harmless jokes about it but i feel very sad and ugly. i take vit B and folic acid to help make blood but is there anything else youve tried that worked for you ?
@kgl2083 how are you doing now? I had jaundice also, but I think my jaundice happened because I had an enlarged spleen, and had to do emergency surgery. I had both my spleen and gallbladder removed when I was around 19. My daughter had it worse than me. She had to do a blood transfusion. Also if you are anemic, try taking some iron. That should help. I hope you're feeling better.
I had to remove both my gallbladder and my spleens when I was 5 because of hereditary sphereocytosis, and 10 years later I still have my battle scars😂. I love that you can find things like this on the internet because this disorder isn't very common and I haven't met another person with what I have. Now I do long distance running for school and I sometimes experience the same thing although it isn't as sever. Like most o the time I can't really focus on my homework because of how tired I am. That and when I'm running I get really bad pain in my collar bones and I searched that up and it said it was a symptom of hereditary sphereocytosis but I'm not quite sure if that's right.
Corrine ONeil I have HS and I'm 16 I have never met anyone with it but it's great to see videos like this because doctors have never actually told me about other cases so it helps to see light brought to it
Its true, the collar bone pain is whats called a sympathetic pain..I had that too after I had my gallbladder taken out..It was so painful! Also, glad to hear you do running, I was a gymnast and my enlarged spleen didn't get in the way at all with the sport... Good for you!
I was seven in 1977, and had my splenectomy and cholecystectomy. That surgery was very traumatic for me and had long-lasting effects. I was operated on by a military hospital, and they left me one huge scar left to right. I had trouble walking upright after surgery. I still ran out of a lot of steam and gym class, and I was punished every day for it. I'm so happy that other children won't have to go through such complications.
That is how my son is, cut entirely across left to right and he went through very similar, not everyone is informed about it, my son continues to have a very poor immune system and lack of energy.
I have HS, although it must be a mild case or I’ve just been really lucky, I’ve only ever had an issue with it when I was 3 and due to most family doctors not knowing enough about HS I came as close to death as you can get without dying and I was actually diagnosed in the back of the ambulance by Dr.Hoarde at Akron Children’s and they just did a blood transfusion and monitored me for a few days and I was good to go, ever since then my red blood cell count has actually been above average and That’s without any vitamins such as folic acid, and other than being more tired than a average person I’ve not had any other issues and I’m now 20, so it’s been 17years, I use to however have regular stomach issues and I found that those of us with HS shouldn’t drink cow milk because it can cause small bleeds in the stomach, and since I’ve stopped drinking milk my nausea has been significantly less
I had my spleen removed 10 years ago and the 10.5 inch scar to prove it haha. I constantly get sick, I feel like I'm living on antibiotics all the time since I can't kick most sickness's my kid brings home.
I think there is some misinformation in both this video and the comments, in that they make this seem more serious than it may be.. I had my spleen removed because of this at 18 and the slight anemia it caused was immediately corrected. I am 72 now and have not had any more problems with immunity than average person. Spleen doesn't have a big impact on immune system. You want to be sure to have the Pneumovax vaccination for bacterial pneumonia. In my case could not find it in either parent or siblings so can occur by mutation. 50% chance of inheritance in your children and both my kids have it. Had their spleens out at 5 years old -no big deal. None of grandkids have it. I do know there is a range of severity and mine was classed as middle of the road. So if you have a child who is jaundiced at birth this is one thing to check. Usually a blood smear under the microscope will detect it and then a cell fragility test confirms it . A total Splenectomy is the treatment. I would have had my spleen out when they diagnosed it at 12 but didn't know as much then but had a college physical by a very good internal specialist who jumped on it when i told him. My bone marrow and liver function was 5 times normal trying to keep up with the blood destruction in the spleen. All this was normal afterward. As they told us at Children's Memorial in Chicago when my kids had splenectomies, if you have a blood disorder this is the one to have . My oldest was hanging off the swingset a few days later, surgeon said don't worry if it hurt her she wouldn't do it.
THANK YOU! Yes it can be extremely serious at like the worst case scenario but they made it sound as if the kid was born and on the verge of death. I was born with jaundice and yes a weak immune system at a young age can cause alarm....but seriously I can almost remember all my doctors appointments for it and my mother does for the ones when I was a baby and yes there are plenty of serious problems that can happen, Ive never (as far as I know) never had the whole 3 days to live speech. Just trying to add drama to the video
Hi I have HS and can assure you that there is no extra drama when you have serious HS or a baby with serious HS. Everyones experience is different and not everyone does well with no spleen.
I think you are not informed many people have died from this and have suffered and suffer all their lives with lowered immune system, ongoing emergencies, lack of energy etc.
I have HS, however, none of my family members has it and doctors have called it a spontaneous mutation. I have had many transfusions and tire very easily. I would like to know if anyone has a hugely enlarged spleen.
Hey freya, i have this aswell and my spleen was so enlarged it actually moved from the side to the front of my stomach. I had it removed when i was 15 and doctors said it was the largest they had seen in a long time for someone my age. they had to wait on a surgery bag to be brought in as they didnt have one large enough at the time. I was meant to be under during my operation for 2 hours and was in fact under for 5 due to the size
Hello Freya - I am the same as you a 'mutant' lol... I have 3 kids and 2 of them (sons) have HS. I have a large spleen too and have had my gallbladder taken out because of stones. They took it out after 20yrs of episodes of pain via key hole surgery. However, my lifelong Haematologist professor never wanted my spleen to be taken out because of the increased risk of infection so 20yrs later here I am with my spleen enlarged but happy to still have it! I do take folic acid everyday and that helps a lot. My hope is that you can hang on to yours too and sort out the anaemia in another way. by the way, I am now 55 years old. Good luck
I had this surgery when I was 8 because my spleen was too large they took my gallbladder as well. As a kid I would get real jaundice. One time my hemoglobin dropped to about 5 I was on the verge as a heart attack and had to have blood transfusions.
Mine was so large it erupted while in surgery. I was as orange as a pumpkin from the jaundice before surgery. My Grandpa, mother, sister, and I all had ours removed, along with my niece, nephew, and daughter.
Does anyone have any feedback on how much of the spleen is/should be removed? Has folic acid helped at all in the management of red blood levels. We do receive wonderful care from our health care practitioners, I just would like to hear different experiences Good luck Ezra!
Folic acid did nothing but encourage the production of blood cells to break down and put the body into marathon mode. The removal of spleen and gallbladder may help however the loss of immunity can be life threatening. Thank God for antibiotics,
I super from this. I had to remove my gallbladder because I got gallstones and doctors advice to remove my spleen too because it was enlarged. I am fine now but get tired fast. I have to take daily medicines.
I have this, for some reason, it affects my gallbladder to, I'm having a pediactric surgeon remove both in one surgery. It's a bad thing in my family, my aunt had to have two different splenectomies because she has accessory spleen.
You probably have gall stones. I had to get my gallbladder removed because my spleen would destroy the red blood cells and then the gall bladder somehow converted the dead blood cells into gall stones.
PopeAK49 I had my galbladder removed in April, and on my HIDA scan I got a 6% so they took it out ASAP, But they left my spleen for some reason, I have to wait another month
My daughter diagnosed recently spherocytosis and she had jaundice since birth do you think it help to her to give a allovera juice and other vegetables that help to boost splen I just want to know what happened to the study of the fish?
Thanks for the video and the comments below were very insightful. We have two children (2 and 4) dealing with a much less severe case of this. We do believe one (2 yr old) of them will have to have a partial at some point as he seems to need transfusions every 3 mnths.
I have this.. I got my spleen removed when I was 10 plus my gal stones.. I never had anything like this.. I had 1/2 blood transfusions and my dad has just had a baby and she has it to.. Shes 5 months old and has had 6 transfusions and they want to operate when she's one but my dad had it when he was 5. I don't think they should do it so early.. I seem to be dependent on penicillin. If i dont take them I got tonsillitis or just ill for ages.. I guess it's not helped that much..
My maternal grandfather passed it on to us, and my daughter was diagnosed with it also. They took her spleen at 5, so she could get all of her important immunizations first. They wanted her on antibiotics for 5 years after the surgery, and we were going along with it for about a half a year, but we worried that if she took them for too long over a long period of time, they wouldn't work right for her later, so we got her on probiotics. She had surgery 7 years ago, and is doing just fine. We didn't find out about the hereditary condition until I was about 18. My mom had hers removed, and my grandmother told us he had it, but he never told us before he died.
I wonder if he would qualify for disability? Also I agree, it's not easy to have, and can be life threatening. Has your son done the surgery? My brother also got this, but only had his gallbladder removed. I thought that was odd that they didn't remove the spleen too.@@LHLK-q2v
My son had his removed in 2007 when he was 8 years old due to HS. He was on an antibiotic for 5 years after and is the most immunized person I know, but he has done very well. His red blood cell count now puts him in the mild category of HS. I hope that your surgery experience is also good, but I can certainly understand being scared.
My grandma had her spleen removed when she was in her 20’s. She just passed away at the age of 88. My whole family has H.S. and honestly we’re all doing just fine without spleens.
i am so happy to have found this video. i myself have hereditary spherocytosis. ironically, my dr was Dr. Donna Dimicheli when she use to work at the Children's Memorial hospit out in Chicago. for years my mom took me from dr to dr. til a neighbor took me to her dr's office and right away he knew there was something wrong with my spleen. i went to the hospital dec 28th. met with Dr. Dimichelli and theu scheduled my appointment for jan 3rd. years later, i now have 2 kids, one also with h.s. i would love to get back on contact with my old dr. she saved my life. bravo!!!
lynnette ortiz so do I now my 3 month old does she's already has had 3 blood transfusions
I need you help myself hereditsry spherocytosis....what i am doing i dont know please you suggested me... My slpeen size 16.8 my fathar check up me with doctor to doctor... But there are no benfet in my life.... Please you can suggested me what am i do....??? Please
@@abdurrazzak5656I have hereditary spherocytosis too. Same as you, I don't even know what to do. Did you found any treatment. And also where are you from. Maybe we can benefit ourselves by sharing our experiences
God bless this little boy. He is such a brave warrior.
Wow. Thank you for this video. All these years, I felt so misinformed with my own condition and my doctor never had explained to me this way. All I knew is that I got a large spleen because I have the same condition as my father. So, when someone asks me my health condition, I just say enlarged spleen and it makes me anemic and has yellowish eyes. I never thought this is what it actually is.
I have HS.
My hematologist didn't know what it was.
That's sketchy.
My family has H.S. I had my spleen removed at 5 years old, all my brothers and nephews have it and had spleens removed. If you have H.S make sure you get a pneumococcal vaccine regularly.
My 2 brothers had HS and both died. The oldest died at the age of 3 and did not take any medications except for blood transfusion for a reason that there is no medication for the past years. Our youngest died at the age of 9 and got all the medications, removed his spleens but then did not survive.
oh that is so sad! I am so sorry to hear this.. Do you have HS?
No, I don't have. I still have 3 siblings. We are all girls. I wonder why it always came up when we have brother..
I am so sorry, people so seldom realize that there are different severities of spherocytosis.
@@evahevemongcupa3199 that is interesting.
@@evahevemongcupa3199you are adopted.
My daughter has this ..only reason i was knowledgeable about it was because her dad has it...but if i didnt my baby might not be here...doctors couldnt figure out why her bilirubin was so high....i thought about when her dad had an episode. And brought that up as a possibility..but her level was at 17..21 u r considered brain dead...thank god she recieved a transfusion and now 10 yrs later shes a wonderful girl
thank goodness you said something.
I am just wondering how is Ezra now after 12 years from this video was done? I hope and pray Ezra is doing much better now with the partial splenectomy that was done 12 years ago.
Some insight from Germany here: I had a partial splenectomy and removal of gallbladder when I was 11 years old. I'm now 37 years old and I'm doing quite fine. I'm exhausted two/three times per month - mentally and physically. I tend to get sick more often with flu-like infections. Since I have an office job, it's not a burden.
I and most of my family have this disease. We have all had our spleens removed completely.
Folic Acid is a must for people with HS. 5 mg a day is what my son takes. He had a total splenectomy.
me also
I have HS, diagnosed when I was 15, I'm 55 now. I had a splenectomy with an accessory spleen and gallbladder removal. No lasting effects, other than keeping an eye on immune system if I get sick. As far as I know, I am the only member of my family to be diagnosed and symptomatic. Since it's hereditary, I find that unusual
Same with me I'm the only one in my family who has it and unfortunately I've passed it to my son
I have it. All 4 of my children have it but their HS is dormant.
Omg my 6 year old son has it and neither me nor his dad has it…we’ve checked with other family members and no one. I’m confused as to how he has it. He’s had 4 blood transfusions he’s first 4months of life…I’m keeping my fingers crossed with this
@@phyllisjohnson4081 I think mom and dad have to be carriers of the recessive gene, if I remember correctly
@@phyllisjohnson4081 Mine started at birth but it took them till I was 15 to figure it out. I too had multi blood transfusions at birth. This was in '65 so they wanted to do exploratory surgery while I was still a newborn, pop said no thank goodness.
my son to was born with hereditary spherocytosis I know what you're going through he has has eight blood transfusions and a major operation to remove his spleen he sees specialist quite often so my prayers go out to you son and your family
Bless I know what it is like, strength to you.
I have hereditary spherocytosis, also my sister and our mother has it, my mother's father had it. My sister has had her spleen removed when she was in her early teens, she is 46 now and i am 44, i still have my spleen, i have suffered all my life with this disease, it me physically! some mornings i wake up fine, and have enough energy to get on with my day without it effecting me at all, but some mornings i wake up and i feel drained, then i find it hard to get motivated, no matter how much i want to do somthing, i phsyically find it very difficult, its wierd, what dosn't help me is the fact that i had a motorbike accident when i was 15 and severed an archery in my leg, so i was given blood but the blood they gave me contained antibodies, mainly anti k, so i that also contributes to my problem. When i was in my teens and right throught to when i was about 35, i used to go yellow on a regular basis, now im in my 40's and i have learnt what not to do i can control it better but i still occassionly go yellow. It's been a long hard life for me, if i am honest about it, having a lack of energy and motivation, and people being quick to judge are probably the two main downfalls of this disease i found. It's not nice being yellow, everyone looks at you, and some people make assumptions!!
Hi @KG Lang, i have the same condition, was detected at the age of 4. since thn I have had low blood count but it was only after 14 that i was diagnosed with pigment gall stones, so i had to get my gallbladder removed too. now i face the exact same problem, going yellow!! my eyes get super yellow too. my friends make harmless jokes about it but i feel very sad and ugly. i take vit B and folic acid to help make blood but is there anything else youve tried that worked for you ?
Hi, I have HS too. Can I ask why you didnt get splenectomy like your sis?
Yessi Rostan it depends on the severity of the disease that the person has some have if more severe than others
@kgl2083 how are you doing now? I had jaundice also, but I think my jaundice happened because I had an enlarged spleen, and had to do emergency surgery. I had both my spleen and gallbladder removed when I was around 19. My daughter had it worse than me. She had to do a blood transfusion. Also if you are anemic, try taking some iron. That should help. I hope you're feeling better.
I have sherepsitosis and I had to get blood transfusions every 2 weeks and I got 113 blood transfusions
God bless, it is difficult.
Why, have your spleen out
I had to remove both my gallbladder and my spleens when I was 5 because of hereditary sphereocytosis, and 10 years later I still have my battle scars😂. I love that you can find things like this on the internet because this disorder isn't very common and I haven't met another person with what I have. Now I do long distance running for school and I sometimes experience the same thing although it isn't as sever. Like most o the time I can't really focus on my homework because of how tired I am. That and when I'm running I get really bad pain in my collar bones and I searched that up and it said it was a symptom of hereditary sphereocytosis but I'm not quite sure if that's right.
Corrine ONeil I have HS and I'm 16 I have never met anyone with it but it's great to see videos like this because doctors have never actually told me about other cases so it helps to see light brought to it
oh and that's awesome that you can do long distance running
cheeseyszx _42 right it’s almost hard to remember that other people have it too
Corrine ONeil I have it too ... got splenectomy at age of 4 .... nor have I met another person that has was I have
Its true, the collar bone pain is whats called a sympathetic pain..I had that too after I had my gallbladder taken out..It was so painful!
Also, glad to hear you do running, I was a gymnast and my enlarged spleen didn't get in the way at all with the sport... Good for you!
I have HS as well I have to get my spleen removed soon and my red blood cells drop all the time I'm really scared to get surgery
I have had the surgery my self not fun but you will be fine
I was seven in 1977, and had my splenectomy and cholecystectomy. That surgery was very traumatic for me and had long-lasting effects.
I was operated on by a military hospital, and they left me one huge scar left to right. I had trouble walking upright after surgery. I still ran out of a lot of steam and gym class, and I was punished every day for it.
I'm so happy that other children won't have to go through such complications.
That is how my son is, cut entirely across left to right and he went through very similar, not everyone is informed about it, my son continues to have a very poor immune system and lack of energy.
damn that scare is small...i got mine out in the 70's and they cut me in half
Know what your saying. I had my spleen removed in 1978 and they gutted me like a fish.
My scar was supposed to be small too, but had an emergency splenectomy.
they still do that if the gallbladder and spleen are enlarged
I have HS, although it must be a mild case or I’ve just been really lucky, I’ve only ever had an issue with it when I was 3 and due to most family doctors not knowing enough about HS I came as close to death as you can get without dying and I was actually diagnosed in the back of the ambulance by Dr.Hoarde at Akron Children’s and they just did a blood transfusion and monitored me for a few days and I was good to go, ever since then my red blood cell count has actually been above average and That’s without any vitamins such as folic acid, and other than being more tired than a average person I’ve not had any other issues and I’m now 20, so it’s been 17years, I use to however have regular stomach issues and I found that those of us with HS shouldn’t drink cow milk because it can cause small bleeds in the stomach, and since I’ve stopped drinking milk my nausea has been significantly less
Good to know
How high the Billirubin level can go in this case of HS
I had my spleen removed 10 years ago and the 10.5 inch scar to prove it haha. I constantly get sick, I feel like I'm living on antibiotics all the time since I can't kick most sickness's my kid brings home.
Bless you so many suffer with this yet not much support
I think there is some misinformation in both this video and the comments, in that they make this seem more serious than it may be.. I had my spleen removed because of this at 18 and the slight anemia it caused was immediately corrected. I am 72 now and have not had any more problems with immunity than average person. Spleen doesn't have a big impact on immune system. You want to be sure to have the Pneumovax vaccination for bacterial pneumonia. In my case could not find it in either parent or siblings so can occur by mutation. 50% chance of inheritance in your children and both my kids have it. Had their spleens out at 5 years old -no big deal. None of grandkids have it. I do know there is a range of severity and mine was classed as middle of the road. So if you have a child who is jaundiced at birth this is one thing to check. Usually a blood smear under the microscope will detect it and then a cell fragility test confirms it . A total Splenectomy is the treatment. I would have had my spleen out when they diagnosed it at 12 but didn't know as much then but had a college physical by a very good internal specialist who jumped on it when i told him. My bone marrow and liver function was 5 times normal trying to keep up with the blood destruction in the spleen. All this was normal afterward. As they told us at Children's Memorial in Chicago when my kids had splenectomies, if you have a blood disorder this is the one to have . My oldest was hanging off the swingset a few days later, surgeon said don't worry if it hurt her she wouldn't do it.
THANK YOU! Yes it can be extremely serious at like the worst case scenario but they made it sound as if the kid was born and on the verge of death. I was born with jaundice and yes a weak immune system at a young age can cause alarm....but seriously I can almost remember all my doctors appointments for it and my mother does for the ones when I was a baby and yes there are plenty of serious problems that can happen, Ive never (as far as I know) never had the whole 3 days to live speech. Just trying to add drama to the video
Hi I have HS and can assure you that there is no extra drama when you have serious HS or a baby with serious HS. Everyones experience is different and not everyone does well with no spleen.
I think you are not informed many people have died from this and have suffered and suffer all their lives with lowered immune system, ongoing emergencies, lack of energy etc.
@@tofu1985 I've had the might not make it through the night speech numerous times.
@@yessirostan1423 exactly and pretending it is all ok is not reality
I have HS, however, none of my family members has it and doctors have called it a spontaneous mutation. I have had many transfusions and tire very easily. I would like to know if anyone has a hugely enlarged spleen.
Hey freya, i have this aswell and my spleen was so enlarged it actually moved from the side to the front of my stomach. I had it removed when i was 15 and doctors said it was the largest they had seen in a long time for someone my age. they had to wait on a surgery bag to be brought in as they didnt have one large enough at the time. I was meant to be under during my operation for 2 hours and was in fact under for 5 due to the size
Hello Freya - I am the same as you a 'mutant' lol... I have 3 kids and 2 of them (sons) have HS.
I have a large spleen too and have had my gallbladder taken out because of stones.
They took it out after 20yrs of episodes of pain via key hole surgery. However, my lifelong Haematologist professor never wanted my spleen to be taken out because of the increased risk of infection so 20yrs later here I am with my spleen enlarged but happy to still have it!
I do take folic acid everyday and that helps a lot. My hope is that you can hang on to yours too and sort out the anaemia in another way. by the way, I am now 55 years old. Good luck
I had this surgery when I was 8 because my spleen was too large they took my gallbladder as well. As a kid I would get real jaundice. One time my hemoglobin dropped to about 5 I was on the verge as a heart attack and had to have blood transfusions.
Mutant here, mine felt like a sack of coins in my body lol
Mine was so large it erupted while in surgery. I was as orange as a pumpkin from the jaundice before surgery. My Grandpa, mother, sister, and I all had ours removed, along with my niece, nephew, and daughter.
Does anyone have any feedback on how much of the spleen is/should be removed? Has folic acid helped at all in the management of red blood levels.
We do receive wonderful care from our health care practitioners, I just would like to hear different experiences
Good luck Ezra!
I had my whole spleen and gallbladder removed and since I’ve felt so so so much better but I have to keep a close eye trying not to get ill as much
Folic acid did nothing but encourage the production of blood cells to break down and put the body into marathon mode. The removal of spleen and gallbladder may help however the loss of immunity can be life threatening. Thank God for antibiotics,
I have this problem and I have no spleen or gold blatter but my family does not have it
I super from this. I had to remove my gallbladder because I got gallstones and doctors advice to remove my spleen too because it was enlarged. I am fine now but get tired fast. I have to take daily medicines.
Penicillian or doxicyclin?
I have this, for some reason, it affects my gallbladder to, I'm having a pediactric surgeon remove both in one surgery. It's a bad thing in my family, my aunt had to have two different splenectomies because she has accessory spleen.
There's no one in my family with it I'm 11 I have no spleen or gallbladder :)
Jorja E must be nice
You probably have gall stones. I had to get my gallbladder removed because my spleen would destroy the red blood cells and then the gall bladder somehow converted the dead blood cells into gall stones.
PopeAK49 I had my galbladder removed in April, and on my HIDA scan I got a 6% so they took it out ASAP, But they left my spleen for some reason, I have to wait another month
Mutant here, both are gone for me and I'm only 16
thank you for this video
My daughter diagnosed recently spherocytosis and she had jaundice since birth do you think it help to her to give a allovera juice and other vegetables that help to boost splen
I just want to know what happened to the study of the fish?
Thanks for the video and the comments below were very insightful.
We have two children (2 and 4) dealing with a much less severe case of this. We do believe one (2 yr old) of them will have to have a partial at some point as he seems to need transfusions every 3 mnths.
transfusions every three months is a lot of transfusions
I have this.. I got my spleen removed when I was 10 plus my gal stones..
I never had anything like this.. I had 1/2 blood transfusions and my dad has just had a baby and she has it to.. Shes 5 months old and has had 6 transfusions and they want to operate when she's one but my dad had it when he was 5. I don't think they should do it so early..
I seem to be dependent on penicillin. If i dont take them I got tonsillitis or just ill for ages..
I guess it's not helped that much..
My maternal grandfather passed it on to us, and my daughter was diagnosed with it also. They took her spleen at 5, so she could get all of her important immunizations first. They wanted her on antibiotics for 5 years after the surgery, and we were going along with it for about a half a year, but we worried that if she took them for too long over a long period of time, they wouldn't work right for her later, so we got her on probiotics. She had surgery 7 years ago, and is doing just fine. We didn't find out about the hereditary condition until I was about 18. My mom had hers removed, and my grandmother told us he had it, but he never told us before he died.
@@LilyWhisperwind She is very lucky.
It is difficult, my son is also dependent on having stand by pennicillin and misses a lot of work. It is definately life threatening
I wonder if he would qualify for disability? Also I agree, it's not easy to have, and can be life threatening. Has your son done the surgery? My brother also got this, but only had his gallbladder removed. I thought that was odd that they didn't remove the spleen too.@@LHLK-q2v
Does splenectomy help to increase the energy level for people with HS? I am considering splenectomy due to my constant fatigue and low blood count
not really it just reduces your immune system sometimes to dangerous levels
@@LHLK-q2v then what are we supposed to do? do you also suffer in summertime? Right now I feel exhausted all day
I have this
I have HS and I get removed October 17th I’m scared 😢
My son had his removed in 2007 when he was 8 years old due to HS. He was on an antibiotic for 5 years after and is the most immunized person I know, but he has done very well. His red blood cell count now puts him in the mild category of HS. I hope that your surgery experience is also good, but I can certainly understand being scared.
Jennifer Myers thank you 🙏🏼 for your support I appreciate it
Ohh how was it?
Lemmuki it was good Ive been taking a lot of penicillin
Mike Henry tbh if it was recommended take it because it helps you fight more infections since you don’t have a spleen that’s why I have to take it
🖤🖤🖤
i have HS!