Does anyone know of anything - Living with Sickl...

Living with Sickle Cell Disease
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Does anyone know of anything

Hello my name is Wytisha. I have two little ones with sickle cell and I wanted to know if there are any event for sickle cell as there is for breast cancer out here in Arizona

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I am the grandmother of a 3 year old with sickle cell. Look up Myah Rose O'Dell or Michelle Garrison or SleevesupforMyah on facebook or instagram. Michelle might be able to help you. Myah goes to Phoenix Childrens Hospital. Great hospital.

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Contact Mari Munoz in Phoenix, She WAS the organizer of World Community SC Event last June. Her email and phone will pop up if you put Sickle Cell Event beside it.

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Hi Wytisha, hope your little ones are doing well. In my answer to your question not that I'm aware of but in Portland, Oregon usually once a year a Black woman Pastor by the name of Mrs. Marsha/Marcia Taylor holds a local telethon. Her daughter who I didn't have the pleasure of meeting passed but, Mrs. Taylor has been a long time

SC advocate. Take good care and blessings to you and yours.

Linda

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Good morning Wytisha. Though we are in California, our annual educational seminar has reached many in Arizona and Nevada. Our 10th Annual SCD Educational Seminar will be held September 6-8, 2018 at UC Davis Medical Center in Sacramento, CA. We provide transportation to those with SCD (provided that you can get to either San Diego, Los Angeles, Antelope Valley, Bakersfield, Fresno - these are the locations that the bus will pick up folks. For more information, contact us at info@cayennewellness.org Peace and many blessings to you and your children.

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Hi Wytisha,

Hope you are aware that sickle cell anaemia is curable through bone marrow transplant. Since sickle cell anaemia is genetic in nature an allogeneic transplant, wherein the bone marrow from a matching donor preferably from the family is taken and transplanted into the bloodstream of the affected person. After the transplant, the new bone marrow starts producing healthy cells in the body of the recipient which cures the condition. The factors influencing success are AGE and Current Condition. Hope this information helps you. In case you want to know more about it please feel free to reach out to me. I will be more than happy to be of any help.

Anjana

anjana@indheal.com

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Suppose the only family member you have is trait?

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If you don't have a match in the family, please do not worry as there is an alternative. In this case, we have to get a matching donor from any available registry. These registries have potential donors of different HLA typing. The procedure checks for the best suitable match for the patients HLA. For sickle cell anaemia, a match of 8/10 is advisable. Hope this information answers your query. In case you want to know more about it please feel free to reach out to me either here or through email. I will be more than happy to be of any help.

Anjana

anjana@indheal.com

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My son has so many antibodies from receiving blood. My greatest fear is that one day they won’t be able to type and cross him.

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Hi Rosebud,

How old is your son? Does he have a sibling who is not suffering from the sickle cell disease? If yes why don't you get their HLA matching done? If it matches the sibling can be a donor for the one suffering. The curative property of a bone marrow transplant is outstanding in children especially in case of a matched sibling donor transplant. In case you have any doubts regarding the procedure to be followed, please reach out to me here or through email.

Anjana

anjana@indheal.com

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