How has SCD effected my family life.

[Somersinger]

I live alone now, that greatly concerned my 36 yr.old daughter who know how these can sneak up one me. We have never told her sons when I've been in hospital nor that I have the disease because it's too scary for them. I don't want them to go through it at their ages. She and I remembers what it was like for she and her (late) brother when they were growing up; during those years I had crisis much more often until I took charge of my own care and learned some crisis deterrents. It's still scary when it happens child or adult but more having knowledge and understanding about this disease affects me does allow me some sense of control. Lawd, knows the docs here I no idea, and won't admit it. I applaud my pc she listens to me and makes decisions about my immediate care based on what I tell her about the pain patterns and what she has learned about the sickness. Somehow we get through. She's a wonderful person. It's when she enlist other physicians ie heart specialist, urologist I can see the spaced out (I don't know anything about this) look on their faces, and then they all start the same spiel which leads to treating me as though I fudge the blood test and put sickled cells on the microscope.

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Thanks for sharing!

[Daelynocr]

I admire you and I know what you're talking about. I'm 67and when l was a child I was told I had the trait. That was in the time period when that word was almost as bad as having aids. Especially for blacks, it was long time before they figure out blacks weren't the only ones to get SCD. I was sick a lot during my childhood. I aching legs all the time, I had cyst connected to my gallbladder and Dr thought it was two until they did surgery on my 19 birthday. I thought I had the trait until I was 41 with my 4th child and had to take all the tests. Technology and medical knowledge is getting better. I have cousin who has SCD and he is now teaching high school. His visit to the hospital have gotten shorter. Thanks for sharing, please think about telling your other children it they are old enough to understand