What are some was to prevent Sickle C... - Living with Sickl...

Living with Sickle Cell Disease
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What are some was to prevent Sickle Cell Anemia?

I am doing a research paper on sickle cell anemia and I have this urge to write about how the disease can be prevented. So can any of you tell me how this can be prevented?

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Yes don't marry someone with the sickle cell trait if both parents have trait the baby will get sickle cell.

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Exactly as jeubanks73 said. There is not enough information out there. Sickle is the most common genetic disorder and yet you still hear from high risk group the Africans, carribeans and African Americana who have never heard of sickle cell disease. People need to be told at every turn. This is a hellish condition. Just one crises can leave you traumatised let alone many. That's apart from organ damage and the stress it puts on everyone around us. I still get shocked when I see babies born with sickle cell. Information and more information. Sickle trait stay away from sickle trait. People are out there and don't even know their genotype. Absolutely crazy.

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Blessings Chakala22.

I initially was unable to post concerning your question. But I sent the response to you in a message. . Your welcomed to post it. Never Cease exposing lies and misinformation because of a few cowards , who suffer with ignorance or they are not disenfranchised by the Lie. The truth only hurts for a little while , while a lie not only hurts , it hurts Generations of human beings ,for lifetimes, while it also destroys lives. Lives are never regained , but always stay optimistic as ,it heals ones mind through it's pain.

Beblessed.

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Hi divinitiesreflexion I am not sure how to respond to this post. I find it a bit uncomfortable and unfair to the person Chakala22 who asked the question. Do you have any proof for those accusations you just made? I understand that it feels like the sickle cell community feels not much is being done to help. You also claim all researches we hear about being false but I am wondering why you feel this way. I hear a lot of people saying more air time is given to cancer and diabetes but nothing to sickle cell and that if sickle cell was a white man's disease a cure would have been found. I think that is a very shortsighted approach. There are still many diseases out there that even white people suffer from and a cure has NOT been found. Secondly, why do we have to depend on white people for a cure? Is it because our own leaders are so selfish they don't think about anyone else but themselves. Why can't African leaders pioneer this instead of us accusing white people of not doing enough. Thirdly, why hasn't the sickle cell charity run adverts on TV educating people about preventing sickle cell here and abroad? And lastly your post is racist and unnecessary. Preventing sickle cell is NOT the job of "the white man". It is our job. We are not so helpless that we need saving. Peace.

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That was my response to your other post.

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Dear Chakala22. When you ask how it can be prevented, you are aware that this is a genetic disease and by it being genetic, it can be passed down by both parents have the trait. Prevention comes from education - educating the public on SCD as well as knowing your trait status. However, SCD will never be eradicated by prevention because some couples make a conscious decision to have children and are wiling to live with the odds. There are some families where there are three out of four children born with SCD or both of their children have the disease.

Second, in response to divinitiesreflexion, I'm not sure what you have or haven't read. SCD is a result of a mutation that created the trait. Malaria is real and wiped out millions around the world (Saudia Arabia, Africa, Southeast Asia, Central and South America). Having the trait put an end to the millions of death that were taking place due to malaria. So, although having the trait, you survived malaria, unfortunately having SCD you became devastatingly ill and died. In the late '60/early '70s, The Black Panthers were the ones to place SCD on the map with testing for trait and the disease. They made great strides in this area. Now, here we are in the 21st century, still with no cure. There is however, more money now than ever before being given for research to find a cure (i.e., Doris Duke Charitable Foundation gave away over 6 million dollars towards finding a cure for SCD). In fact, I know a few of the researchers who are passionately dedicated to find a cure or come up with a new treatment. Endari (L-Glutamine) is the selfless work of Dr. Yutaka Niihari who has dedicated over two decades of his life to sickle cell disease; Dr Donald Kohn and Gene Therapy, has dedicated the latter part of his life to finding a cure for SCD; Global Blood Therapeutics has an extremely promising treatment for SCD and I know them as well. I REFUSE to start blaming anyone for my plight. I am where I am because of decisions I made (wise and not wise) based upon my beliefs and values and how I feel about myself. So there is no white supremacy in how the disease came to be; frankly, it was self-preservation/survival of the species (which is why the gene mutated). Now, as for people living with the disease - yes, we have all been through it. Accused of being a drug addict, waiting endlessly in the emergency room, being seen by inept healthcare providers who are unable to properly manage and treat SCD, egoists who refuse to refer to the NIH guidelines - a book that outlines how to treat every complication and manage the disease. The fact that we are dehumanized is real. If there is to be a change, I think it wise to start a non-violent movement and come together across the US and globally to let everyone know Sickle Cell Lives Matter and we're not going to take this anymore. Blaming gives power to the 'enemy'. Taking action, gives power to me and others. I refuse to blame and will not join you in what you are saying because it's not correct. Yes, yes, more money is given to Cystic Fibrosis than SCD because they are white. So why not learn from how they achieve their money (it's no secret) and use the template and do the same. However, if you and others want to continue to blame, know this. Because of this division, we will remain exactly where we are. If we can come together for the greater good, we will be a force to be reckoned with.

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To prevent having Sickle Cell Diseases Child is by having genetic screening and counseling of people that carry the abnormal gene of Sickle Cell Disease before potential couple , with abnormal gene think about marrying with each other.

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Hi Chakala, I’m not sure if there is anything you can do to prevent it. It is a genetic disorder. If two people with the sickle cell trait have children together, it is a chance the children will be born with sickle cell. In my daughters case, she and I were unaware that we have hemoglobin C, which is not sickle cell trait. Her husband has the sickle cell trait. When she was pregnant with her twins is when she was told she had hemoglobin C & there was a chance that her babies may have, either hemoglobin C or S C sickle cell. One of the twins has sc sickle cell, the other one has normal blood. She also has another child with SC Sickle cell. Genetic testing & researching your family genetics is the only way I know to help prevent. Best of luck with your paper. E.M.

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Most of the people are right, but you have to actually do the research. It is preventable with education in the classrooms and lab tests. A nation can eliminate SCD in 25 years or less. Some in the middle eastern and some in the european countries did just that. It is not going to be about love, it has to be about education and using the mind and telling all your kids not to marry anyone with the disease or the trait. I had to do that as someone with the trait. It is too much of a burden to keep the cycle going. It is actually a national security issue in some smaller countries due to the unhealthy people it create in society, and the burden on personal funds as well as the health system.

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We are born with it. The parents have to knowbefore having children

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Hi Chakala22, without researching the topic and speaking straight from what I've been thinking of for many years. When I became engaged many years ago I asked my fiance to come to my home state and meet my physician and have a blood text. Realizing that myfather never knew what his Mother had died from, when he was thirteen years old. He knew she was always in bed and in a great deal of pain but, when my parents married in 1954 SC Disease wasn't known about so my parents were not aware they both were carriers of SC Disease. So why all these decades later are children still being born with SC Disease when I thought it was long common place for all infants to be tested?? If not..they should be.

Thanks, Living Life

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In some states/areas, it is not required anymore to be tested for the trait or the disease....so sad.

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Chakala22, it is correct.....to prevent the disease, testing must be done and the people tested have to choose to not get involved with someone with Sickle cell trait or the disease....that means, communication has to be done in the beginning, upfront. Each person has to take responsibility for this disease. Be tested and know your Genotype, know what abnormalities, diseases, conditions, whatever....know what you carry so it doesn't keep being passed down. This disease takes away your life; it takes away your ability to keep a job for a long period of time, it can also take away your dreams. Please get tested for the sickle cell gene before getting pregnant, before getting emotionally involved, before having unprotected sex and risking bringing another child in the world with this horrible disease. It takes away too much from the sufferer and those who care for them. If you have watched someone experience a severe crisis, then you would understand why I have said what I have said....Get Tested!!!

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Hi Cynt-ann53, you know I hadn't realized that they have reduced the what I thought would remain mandatory the testing each newborn child for SC at birth. Thank you, for having brought it to my attention that once again things that should be in the foreground have been swept under the rug, in my own personal estimation it's because it effects mainly the incorrect skin colors. This disease is so horrible that it should always be tested for. Thanks So much for teaching me something I was completely unaware of. Blessings, Living Life.

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My granddaughter was born with SCD and when my daughter was pregnant she found out she had the trait and so did my granddaughters father. Even though we knew it was 50 percent chance that she will be born with SCD my daughter decided to go through with her pregnancy and I so happy she did. I love my granddaughter with all my heart and yes it is disappointing, but yet a blessing.

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Know your genotype and make informed decisions on your life partner.

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