A new diagnosis: For many years I have... - Sickle Cell Society

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A new diagnosis

faithfullyyours profile image
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For many years I have been living with pain and was tested as having AS trait. Recently after having at least 3 painful episodes in less than 8 months, I was referred to a hematologist. He explained that I could not be in crisis with only the trait and decided to complete further tests. Well the results are in and I have been diagnosed as having Sickle Beta+Thalessimmia, a mutated form of the Sickle Cell Disease. What this means, I do not know. At present I am completing 10 questions in which to ask the specialist when I meet with him in December . The pain continues.

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faithfullyyours profile image
faithfullyyours
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Cynt-ann53 profile image
Cynt-ann53

Hi, I am so sorry to hear that you are in a lot of pain with this. My 25 year old son has full blown Sickle Cell Disease. through the years, I have made sure that he drinks plenty of water to keep the blood from being thick. The thinner the blood, the easier it is for it to circulate those misshaped red blood cells. Also, WE eat a lot of healthy foods....green leafy veggies, fresh fruit, etc., and I go to the health food stores (not GNC) to get herbs that help build up his immune system and keep him even more healthy. For the most part, he has done well and has had less painful crises than most with the Disease. However, one year, he ended up hospitalized 5 times (very unusual for him) because he was not drinking enough water, nor was he eating right. Now he is back on track. You really have to pay attention to what is going on with your body, and research when using herbs so that you do what is better for your own body. Herbs can be very helpful, because of the lack of side effects...when used properly.....that is why you should research, ask questions, go to the places that specialize in herbal remedies.(I recommend the book "Prescription for Nutritional Healing") BUT, if you are a person that does not like to read and you doubt that you will develop an appreciation to read, even if it is for your own health, DO NOT use herbs. You will do more damage to yourself by taking something that you know nothing about. I hope this was helpful to you.

faithfullyyours profile image
faithfullyyours in reply to Cynt-ann53

Thank you for your solid advice. This has been a good year for me. I have been using the advice of my doctors and have only had one issue thus far. God willing the only one. Yeah!!!!

I hope that your son is also well.

sonr777 profile image
sonr777 in reply to Cynt-ann53

Please my son is as and he is healthy however at times he get cramps in his legs so I try with D3 supplements and give him veg and fruits most interesting you mentioned herbs may I ask the names of the herbs as I use herbs a lot however never for sickle cell.

Cynt-ann53 profile image
Cynt-ann53 in reply to sonr777

I have used Echinacea and Goldenseal to help build up his defenses. I use Kelp to help with trace mineral supplement. I use D-3 and all the B-Vitamins because they are very important to have. WE do juicing with veggies and fruit. I try to keep Emergen-C to add to the juice drink. We use ginger. I have done research to cater his nutritional needs to his needs. I would advise the same for you. Currently we are trying Cell Power. You add it to your water or drink. My son it helps him to not feel so tired all the time. This may be something to help you. I wish you success in your journey to take the edge off the pain, because that is just what it seems to be.

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