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 transfusions... With my seizures I was on tegretol, and I was rececitated 3 times. But I was able to grow out of the Siezures. I have been on PenVK since I was young, now that I am in my late thirties, I am up to 1000mg PenVk daily. About 5 years ago, several Dr's told me to wean myself off the PenVK due to their thinking that I would become Immune to the effects and with such a high dose, and I had Acid Reflux caused by the high dose of antibiotics. In following their recommendation, I became extremely ill and ended up in 2 different hospitals with a constant temp of 104 degrees Fahrenheit. I was then told that I would definitely need to stay on antibiotics for all of my life. During that time they became concerned with my large thyroid and hypotyroidism. I started taking Levothyroxin, although I was not great at remembering to take it daily like I was supposed to. 4 years ago I started getting sever abdominal/chest pains and spent alot of time going to the ER and specialists... including an air contrast barium enema, not fun. A year later while in the ER they realize that I had gall stones, two weeks later I had my gall bladder removed. The next year all my teeth were finally getting to the point of disrepair due to my acid reflux, so I bit the bullet and went ahead with a Full Upper Denture and removed all off what was left of my upper teeth. I made a plan to do the same with my lower part of my mouth as I only have 3 real teeth left on the bottom. During my last physical, my Dr was concerned with my Thyroid and the symptoms I was telling him, so he sent me immediately to my Endocrinologist. I was then told that my Thyroid was Impressive and needed to be removed. Right now I still am recovering From a Total Thyroidectomy, and I now have to consistently take Levothyroxin for the rest of my life. There are so many more details I have, but this is a general guide to my life with Hereditary Spherocytosis!
Jason120 Jason120
36-40, M
1 Response Mar 16, 2011

was there a correlation between your HS & seizures? my nephew has not been dx with HS, but i suspect he may have it due to our family history, and has had three seizures in the past year. my sister refuses for some reason to get him tested for HS... email me at mkoechling at att dot net. thanks