I am a 24 year old African American/ Creole Women living in Sonoma County. I was diagnosed with SCD when I was 3 years old. I live with my mother and father still because my health has been on the down turn ever since I was diagnose with RA (rheumatoid Arthritis) last fall 2010. I have 2 sister and 3 brother one of my brother has the trait and one of my sister has the trait but I was the lucky one to get SCD not just SCD but SS trait. Not SC or SA, SS the worse one, or so I have been told. I…

Hello everybody,

Sorry I have being so away. Actually I think since I got pregnant with my second child I didn't had much time to sit and share some about us. My son is already 2 years and 9 months old, and as good as it can look, we can say we had have never any problems with him. He only had swelling on his foot and hand once, when he started teething, and despite his hgb level being always lower than 6g/dl he is a hyperactive little one. Yeah, we had a little girl back on Feb.…

Hello SC Family,

Is there anyone out there who has trouble sleeping at night?  It does not matter what I take my body seems to get use to the medicine and I am up.  Any help or advice will be appreciated.

Thanks,

In a recent article by Salynn Boyles for WebMD Health News it was discovered that “after just four, 20-minute instructional sessions in mindfulness meditation, most participants in the small study experienced big reductions in pain intensity and unpleasantness of pain.”



In this study researchers recruited 18 healthy young adults who had never…

BEWARE:  People with Sickle-cell who take pain medications need to know the effect on their kidneys.

Read my latest blog post…

I am a parent of an adult child who has suffered all of his life not only physically but emotionally as well .it troubles me greatly each time hear that my son is going through a Sickle Cell Crisis .I hate the way he is treated during his often long stays in the hospital begining at the ER. It seems the doctors greatest fear is giving too much medication which would lead to a law suite . On a scale from 1-10 I do believe my son's level is often a 9. The doses of medication that he receives…

i was curious to see if anyone was able to receive anything government wise in regards to our condition.

i was actually approved for SSI which took 4 years, but...... (eye roll here), once at the office to get things in order i was told that i am not disabled, that i am able to actually work, therefore my case was closed.

its frustrating because they do not take into fact that sometimes i am out of work for days, even weeks. so where is my income at that…

i was highly upset last night when i check into the emergency room at my local hospital. to my surprise i was taken straight back to a room, but anyhow

when asked what helps the pain, i asked for demoral and their reply "we dont do demoral any longer, what about morphine" i had to laugh a little in my mind b/c morphine is like taking an advil now. it does nothing for pain being that ive had it since my first crisis at 7 years old.

anywhoot, the doctors ordered…

Hi everyone,

I reseached about the sickle cell cure and i was told by Canada and USA Consultant that there will be a cure next 5 to 10 or 15years time and is bone marrow. They also advise not to let anyone use us for any trial no matter how much pain we have.

Please tell me what u think about the cure and any more info bcos i only believe Almight God.

Make comments to Institute of Medicine regarding pain care and treatment improvement issues.

See my blog http://sicklecell-ourvoice.blogspot.com/ and follow the link to add your comments. 

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Depression is a thief...it robs you of energy, vitality and motivation.  It is often associated with chronic conditions and pain.  Self care, as you might know, is crucial. There are several self-help practices you could explore.  

I think an important approach is learning to be optimistic.  There is a life changing school of thought known as Positive Psychology: the founder is Martin Seligman, PhD.  He, through his book, Learned…

Graduation Letter

Dear Self

                It is significant that you recognize your talents, visions, goals and aspirations. Remain focused and continue to accelerate into new ventures that will elevate you as an individual. As you reflect upon your past, you have struggled and endured various obstacles that make you the man that you are, and you will continue on the same path. You are willing, able and courageous enough to take on any obstacle, persevering no…