Hereditary Sphercytosis

Jcas · Post by **Jcas** » Fri Mar 03, 2006 6:42 pm

Anybody had dealings with Hereditary Spherocytosis? It is a genetic blood disorder where our red blood cells are the wrong shape.

It is rampant in our family, but i find a lot of the doctors are not so familiar with it, i have it, and it makes you very tired.

I would be interested to hear from anybody that has found out a bit more about this.

TazLdy67 · Post by **TazLdy67** » Mon Aug 21, 2006 9:25 am

I have Sphercytosis and had to have my spleen taken out due to the red blood cells collecting in it. I have 3 other sisters with this also. I have a brother but he does not seem to have it. I was 24 when I had my spleen taken out, two of my three sisters have had their spleens taken out. I would like to know how you and your family are doing with it.

Jcas · Post by **Jcas** » Thu Oct 12, 2006 7:43 pm

None of us have had our spleens removed. After your spleen removal, do you still get tired easy, and is your immune system any stronger etc.

My brother is 55 and has had a heart transplant, because he got the flu so bad that his immune system couldn't fight it and the flu virus attacked his heart, he is 12 months post transplant but fighting rejection.

My sister 59 has developed lymphoma and is fighting it with all she has. I don't want to frighten you but the one thing we find with the sphercytosis is that when we do get anything wrong with us, it takes ages and an almighty battle to get over it.

amandas_angels_can_hear · Mon Dec 18, 2006 10:36 am

I am in the same postion...Finding out about the hs isn't easy ....My daughter was diagnised 9 years ago..There are no supports groups..Right now she is going thru a difficult time...she has been at home for 2 months no school...She is preparing for gallbalder removal and spleen...

When did you find out?

Folic acid ..tblet..Some what helps....(iron)

Jcas;255925 wrote: Anybody had dealings with Hereditary Spherocytosis? It is a genetic blood disorder where our red blood cells are the wrong shape.

It is rampant in our family, but i find a lot of the doctors are not so familiar with it, i have it, and it makes you very tired.

I would be interested to hear from anybody that has found out a bit more about this.

Jcas · Post by **Jcas** » Tue Jan 30, 2007 2:08 am

amandas_angels_can_hear;490151 wrote: I am in the same postion...Finding out about the hs isn't easy ....My daughter was diagnised 9 years ago..There are no supports groups..Right now she is going thru a difficult time...she has been at home for 2 months no school...She is preparing for gallbalder removal and spleen...

When did you find out?

Folic acid ..tblet..Some what helps....(iron)

I discovered my HS about 20 years ago , but as our newborns arrive they are testing them at birth. All my family members with HS have had gall bladders removed, and some have had the splenectomy.

I would be interested in your daughters progress after her surgery. We also take a 5mg folic acid tablet daily.

Russ Richmond · Post by **Russ Richmond** » Mon Oct 29, 2007 12:15 pm

I have three out of four children with HS. All but one have had spleens removed. The child with a spleen still is fighting with low Crits but the two without spleens are doing great. Has anyone ever heard of treat low blood counts with steroids such as prednisone ( please excuse my spelling)?