At a recent 2013 NCAA national conference sickle cell testing of athletes was approved. (see NCAA link for article) 

Some people agree, some disagree but there could be a bigger issue. Newborn screening!…

My 13 months old was diagnosed with SC last week. I am reading and learning as this is all new to me. I would appreciate any advice regarding nutrition, medication etc. Drs prescribed daily penicillin  - what are you thoughts on this med for a 13 months old? Are there other alternatives?

So as many of you and those of you that don't know I have sickle cell. But what is new in my life is the my current boyfriend and childhood friend also has sickle cell. We have been together for a year and a half now. I can say that for the most part he can be a great boyfriend and male to my kids.But we both SS now I now they say the male have it worse than the females. But I also know what is pain and got wanting the meds. I can say that it do help better than the pills for pain when it is…

Hola Everyone,

I was just wondering how your social and dating lives are affected by sickle cell???

I rarely meet people who can relate to what I'm going through. Dating is a no go b/c people never understand why I'm in the hospital so much, why I go to bed early, why I take daily naps. It gets to be too much and I realize that no one will ever understand what I go through unless…

hey friends its been a while i have to say i have been ok  in the past couple of months. i havent had to go to the hospital for a crises things are looking up i have it manged for now thank you god now how have you all been let me know would love to hear and give advice  if i can

Hey Guys,

Just a little news on what I have learned about meds, Pain meds especially. As patients we feel as though our doctors will tell us everything and have our best interest at heart. I learned through trial & error that it's not always true. For years I've taken Tylenol with Codeine, Hydrocodone, Percocet... You name it I've prob taken it. Point is these medications damage…

I have been able to get off all medication and now only take Hydroxyurea for my SCD, Methotrexate for my RA. With monthly transfusion. I take over the counter vitamins like C,D, and E as well as Fish Oil. I no longer need Dilaudid for pain and only take Hyrocodon-Acetaminophen AKA Vicodin for any pain. I do smoke Gods meds and that helps with stress and depression. Since my surgery i have been greatful and blessed. Though health problems still come my way I am now conciders class 2…

Because WE have a debilitating disease some have and do take advantage of us!!!   

Red cel tea is actually Rooibos Tea!...

There is a post on this site about Red Cel Tea and it's help with SCD.

http://www.redceltea.com/

The TRUTH is it has been called this only to TARGET PATIENTS OF SICKLE CELL DISEASE!

This is REALLY   Rooibos Tea. Also Known as "The Red Bush Miracle" or Redbush tea. Take a look at the…

Hello Everyone, I was notified on Twitter that the US National Heart, Lung, Blood Institute (NHLBI) is requesting public comment on the "New" treatment…

I get so many flyers for sickle cell awareness & fundraiser events I don't know where to put them. I do feel obligated to share, so I will post some flyers here and on Facebook or Twitter . Here are two events:

One event I…

I have two others children ,a 10yr old boy and a 7yr old girl apart from the one with SCD.They have started asking about why baby sister is always taking medication.I have been explaining to them slowly following their level of understanding and encouraging them to always look out for one another especially baby sister.Its been quite a challenge trying to take care of Tabo(by the why my name is brenda,Tabo is my daughter's name) at the same time ensuring the others dont feel loved less.My…

Hey everyone, keep up with my Twitter account @pallenj - for important information that needs your comment. 

Soon.....we (people with sickle cell & public) will be allowed to comment on the updated National Heart Lung Blood Institute (NHLBI) 'red book' - The Management of Sickle Cell Disease guideline (see the team working on this…

Check out www.sicklecell-ourvoice.blogspot.com to find out more about Priapism. God bless our men who have sickle cell disease!!!!!!!!!!!

Magnetig Therapy (the application of static magnets to the source of pain) is supposed to increase blood circulation thus reducing pain...Do they work?

This is not necessary a question but a comment. I posted pics of my son's graduation and skydiving adventure. He is on his way to NC A&T to study computer engineering. I am so proud of him and how he has continued to stay strong no matter how he may be feeling. My son and everyone on this site are such an inspiration to a mother with a child with SCD. I pray everyone affected by SCD remain healthy and happy. You all just dont understand how inspiring it is to hear others affected by this…