Stem cell transplant for sickle cell patients

A possible cure for a debilitating disease. It strikes one in 500 African Americans. Many live day-to-day on heavy painkillers. Now a new take on an old treatment may put an end to their suffering.

Dr. Damiano Rondelli, University of Illinois Hospital Hematologist: “It’s a social issue. It’s not just a medical issue. The cost, the family involvement … it’s a really big deal.”

It is sickle cell anemia, an inherited defect of the red blood cells. More rigid than normal round cells, the crescent – or sickle-shaped cells — get stuck in small vessels, blocked from delivering oxygen to organs, tissues and joints.

Dr. Rondelli: “Damage to lungs, kidneys, liver. The major symptom is pain.”

Beverly Means, mother: “His hand and feet had swollen up, and I took him to the hospital and they were telling me he had sickle cell. Never heard of it in my life.”

But it was a disease that would take over Beverly Means’ life – and the lives of two of her sons, Julius and Desmond.

Julius Means, sickle cell patient: “Some of my first memories having sickle cell, playing one day and the next day not being able to even walk.”

Diagnosed at eight-months-old, Julius has struggled with sickle cell disease for 25 years.

Julius Means: “In and out of hospitals all the time. The majority of the pain would hit me in my legs and my back. So being a young kid and not being able to play with the other kids was pretty awful.”

Beverly Means, mother: “It was mental torture. It was hard. Devastating to watch your kids and you can do nothing.”

Even doctors struggle — they have little to offer. Narcotic pain killers and blood transfusions help but offer only temporary relief. So when an NIH stem cell transplant study showed promise, University of Illinois Hospital’s Dr. Damiano Rondelli took notice.

Dr. Rondelli: “They reported they could do transplant in sickle cell patients without using chemotherapy.”

In a stem cell transplant, doctors infuse healthy donor cells that gradually take over the recipient’s bone marrow to produce normal red blood cells. Traditionally, the process starts with high doses of chemotherapy to kill off a patient’s own cells and prep the body to accept the new ones – a practice deemed too dangerous for those with sickle cell who already have organ damage. But the NIH study used more tolerable and less toxic immunosuppressing drugs in place of chemo.

Dr. Rondelli: “The results were amazing. Because of our large patient population of sickle cell, we opened the trial here.”

That’s when the Means brothers jumped in. But they would need a highly compatible donor – a sibling. They turned to their big brother, Clifford. Doctors quickly tested his blood.

Beverly Means: “He was like, ‘You’re not going to believe it! He’s not only a match for Desmond but for Julius also.’ Ten for 10 perfect match for both brothers.”

Julius Means: “Wow, all this time we had the cure!”

And that’s what Dr. Rondelli is hoping it is. So far, follow up blood tests have been impressive – and surprising.

Dr. Rondelli: “The cells in the blood, the red cells are completely from the donor. The sickle cell is gone.”

Eager to spread the word about his successful transplant, Julius wrote a song to help educate others about his experience.

His mother is simply grateful her boys are healthier.

Beverly Means: “I’ve won the lottery of health. I’m happy. We’re all happy.”

If you’d like to learn more about the University of Illinois Hospital Sickle Cell Center, go to http://chicago.medicine.uic.edu/departments___programs/departments/dom_sicklecell

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9 comments

  • reda robinson

    I STAY IN INGLEWOOD CALIFORNIA MY DAUGHTER IS 27 YEARS OLD AND SHE REALLY SUFFERING FROM SICKLE CELL I WISH I COULD HELP HER SHE CRY SO MUCH IN AND OUT THE HOSPITAL PLEASE HELP US MY NAME IS EURYDICE E. ROBINSON MY EMAIL REDA.ROBINSON@YAHOO.CO . 223 W.QUEEN ST #6 INGLWOOD CA. 90301 MY DAUGHTER IS MYNISHA E NEAL

  • Carliza Brown

    Hello
    My name is Carliza Brown Dapson and i liive in Costa Rica, I was diagnosed with sickle cell when i was 6 months old im 36 right now and living with this illness all my life, in the last 5 yrs my SCD has gotten worse and when i heard about this cure i just got so excited of the this posibility im got soo much hope. I dont have any organ damage so far but my pain is starting to be inmanageable
    May i have the email of the Dr or the dept i can email to get more information of these stem cell procedure to see if this reality can be true for me please?
    My email is boss.ldy35@gmail.com
    I really aprecciate all the help provided

  • dennis d

    my x fiancee had a somewhat similar treatment for primary amyloidosis and it was radical but saved her life threw mayo clinic. my current fiancee has sickle cell anemia i would like more info on this if possible. my email is goose58431@yahoo.com, am glad there are finally starting to make breakthrews across the board on these debilitating and killing aspects of anemia. i lost a grandma to leukemia a long time ago. ty

  • Renee Hackett

    Hello everyone, my name is Renee Hackett and I have Sickle Cell Disease (SS). I have been suffering with this disease for all my life. I live in Chicago Illinois and I'm praying for a match for the bone marrow transplant because my only sibling who would have been a perfect match is deceased. I have a lot going on from this disease and would like to hear from others with sickle cell whether they have had the procedure done or not. Beverly can u email me at reneehackett@sbcglobal.net. I would love to hear more about what was done in the stem cell procedure.

  • Jai_Jordan

    Thank you for producing this segment and bringing necessary information to a community that so desperately need options that can improve the lives of many people (adults and children). This type of awareness, although optional is a necessary step for such a 100 year old blood disorder. To the producer, please keep more about sickle cell coming so that awareness is achieved in larger capacities.

  • Lynnetta

    My daughter name is nakia. She is 19 and is suffering from sickle cell.she had a stroke in november. She had paralysis on her left side. She had a friend call her about the broadcast in Chicago. We would like to be considered as a candidate for the procedure. We moved from Chicago 2years ago and went to UIC and Larabida when she was a kid. Can be contacted at lynnchee1@gmail.com

  • Renee Hackett

    Beverly, I was glad to have met you and your sons. I look follow to here from you guy in the near future. I would love it if you could send me an email address so that I can get more information from you and you sons if possible. Thanks for visiting with us over at UIC.


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