If the patients get frequent blood transfusions, then they are at risk for “Iron Overload” and they would need an additional treatment with a chelating agent like “Desferal”. Am I correct in making assumption, sir? Do you a video on those that suffer from either “Alpha” or “Beta” Thalassemia, sir?
I have severe hs but I am falling through the cracks cause my gp doesn't understand it and the hematologist passed me back to gp after telling me to take folic acid and i will be fine. i need to find a support group.
Because hereditary spherocytosis is a type of hemolytic anemia ...which needs erythropoiesis after each hemolysis...then we need folic acid in case of cell division for DNA maturation during erythropoiesis after hemolysis
1st generation H.S patient who passed it down to her daughter. We have both had a splenectomy. However, I have been recently told that my body has grown an accessory spleen. My daughter has not. My daughter has had 20 transfusions by the age of 2. However, she has an allergy to blood products which resulted in a splenectomy early in her life at 4 vs the recommended age of 7 because she was getting the transfusions so much. Now, my concern is more of the covid spectrum and the vaccine. Anyone here also have H.S and has gone through covid and or the vaccine? If so, what was your experience. I have been trying to find out if it is worth my daughter and I getting the vaccine but there just isn't enough medical studies with our conditions.
I am also a 1st generation H.S. patient who had a splenectomy at 15. I would consider myself having severe symptoms since I received a blood transfusion right after I was born. I was worried about getting the COVID vaccines due to our condition but decided to get it since I work in a medical environment where I see many patients. I received 3 Pfizer vaccines over 5 months according to the guidelines and had no serious side effects. Also, I got COVID 5 months after my 3rd shot and was able to recover soon, although the throat pain was terrible. I think getting the vaccine helps to protect us from going into critical conditions. Hope my experience was helpful for you and your daughter!
So my doctor ended up advising us not to get our daughter vaccinated since she has a horrible allergy to blood products and we didn't want her to go into an Anaphylactic shock without those studies. However, we have been great and ended up dealing with covid like a breeze. As for those with h.s and the shots, how was the next couple days after administering?
I came here because I actually have this disease and my eyes when I’m sick turn yellow and this sucks if you get knocked out it’s going to turn out very baaaad
@@amv3921 that sucks. Doctors decided to keep my spleen even though I was severely at risk. They said if I have another incident they’re removing my spleen and gallbladder
@@kam1k189 It wasn’t that bad. I was put on penicillin for 5 years after the surgery. Since then I lived a relatively normal healthy life. I’m 30 now. Wishing you all the best whatever your doctors decide to do!!
@@amv3921 Just out of curiosity... My daughter and I also have H.s and went through a splenectomy. My DR said that Per the CDC it states that patients like us are to take antibiotics for life (alternating between amoxicillin and penicillin to avoid your body becoming immune to the antibiotics) with every 5-7 years, having to get the pneumococcal shot. how have you been after the splenectomy and have you already stopped taking antibiotics?
I've seen other videos on this and jj only one that explains the mechanism of elevated mchc. well done!
So helpful, thank you!
thank you, helped me much
If the patients get frequent blood transfusions, then they are at risk for “Iron Overload” and they would need an additional treatment with a chelating agent like “Desferal”. Am I correct in making assumption, sir? Do you a video on those that suffer from either “Alpha” or “Beta” Thalassemia, sir?
I have severe hs but I am falling through the cracks cause my gp doesn't understand it and the hematologist passed me back to gp after telling me to take folic acid and i will be fine. i need to find a support group.
I am here if you need help. I have dealt with it my entire life and have gotten treatment for my daughter who also inherited the disorder.
I really need help with this and I really need to talk to someone about my symptoms.
@@jocelynnebruce7894 what's up? If I can help, I am here. I remember what it was to not have any help.
Anyone get pains where liver and gall bladder is??
What is the treatment for this? We think my son has this. We’ve been searching for 8 years for answers, and multiple transfusions
Why we give folic acid for treatment?
Because hereditary spherocytosis is a type of hemolytic anemia ...which needs erythropoiesis after each hemolysis...then we need folic acid in case of cell division for DNA maturation during erythropoiesis after hemolysis
1st generation H.S patient who passed it down to her daughter. We have both had a splenectomy. However, I have been recently told that my body has grown an accessory spleen. My daughter has not. My daughter has had 20 transfusions by the age of 2. However, she has an allergy to blood products which resulted in a splenectomy early in her life at 4 vs the recommended age of 7 because she was getting the transfusions so much. Now, my concern is more of the covid spectrum and the vaccine. Anyone here also have H.S and has gone through covid and or the vaccine? If so, what was your experience. I have been trying to find out if it is worth my daughter and I getting the vaccine but there just isn't enough medical studies with our conditions.
I am also a 1st generation H.S. patient who had a splenectomy at 15. I would consider myself having severe symptoms since I received a blood transfusion right after I was born. I was worried about getting the COVID vaccines due to our condition but decided to get it since I work in a medical environment where I see many patients. I received 3 Pfizer vaccines over 5 months according to the guidelines and had no serious side effects. Also, I got COVID 5 months after my 3rd shot and was able to recover soon, although the throat pain was terrible. I think getting the vaccine helps to protect us from going into critical conditions. Hope my experience was helpful for you and your daughter!
Why don't they take your spleen out. No transfusions needed then
I've had covid vaccinations with Spherocytosis
So my doctor ended up advising us not to get our daughter vaccinated since she has a horrible allergy to blood products and we didn't want her to go into an Anaphylactic shock without those studies. However, we have been great and ended up dealing with covid like a breeze.
As for those with h.s and the shots, how was the next couple days after administering?
@@lynortiz7971 are you in America
Thanks
Thank you for the video, it's really helpful. but is the "erythropoietin" in last page spells wrong?
SIR
PLZ TELL ME THIS SPHEROCYTOSIS COMPLICATIONS
What are the complications you asked?
Can i ask for pdf of the topic?
Very informative✌️ thanks!
Im greek but i removed mine when i was 6 because of that
💖💖
I got mild HS
👏🏻✨🧚🏻♂️
I came here because I actually have this disease and my eyes when I’m sick turn yellow and this sucks if you get knocked out it’s going to turn out very baaaad
Yea. I have it too I hate it
I had it when I was 10. Had to get blood transfusions and my spleen and gall bladder removed
@@amv3921 that sucks. Doctors decided to keep my spleen even though I was severely at risk. They said if I have another incident they’re removing my spleen and gallbladder
@@kam1k189 It wasn’t that bad. I was put on penicillin for 5 years after the surgery. Since then I lived a relatively normal healthy life. I’m 30 now. Wishing you all the best whatever your doctors decide to do!!
@@amv3921 Just out of curiosity... My daughter and I also have H.s and went through a splenectomy. My DR said that Per the CDC it states that patients like us are to take antibiotics for life (alternating between amoxicillin and penicillin to avoid your body becoming immune to the antibiotics) with every 5-7 years, having to get the pneumococcal shot. how have you been after the splenectomy and have you already stopped taking antibiotics?
this suck cuz I got this disorder from my mom