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!!!

God bless this little boy. He is such a brave warrior.

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.

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.

thank you for this video

Folic Acid is a must for people with HS. 5 mg a day is what my son takes. He had a total splenectomy.

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.

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.

I and most of my family have this disease. We have all had our spleens removed completely.

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 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

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!!

I have this problem and I have no spleen or gold blatter but my family does not have it

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.

damn that scare is small...i got mine out in the 70's and they cut me in half

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

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?

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 have sherepsitosis and I had to get blood transfusions every 2 weeks and I got 113 blood transfusions

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 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.

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.

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.

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.

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 have this

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..

🖤🖤🖤

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.

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

i have HS!

I have HS and I get removed October 17th I’m scared 😢