September marks the month of bringing awareness to this awful and hateful disease, Sickle Cell Disease.
Today my post is for the families of the loved ones suffering with this disease. Yes our loved ones are suffering but we are also suffering. Yesterday I had a very tough day just thinking and speaking about it. My loved one has been down for almost 3 months and this is the worst she has been. I have another loved one fighting tooth and nail to survive and make it in this world without losing her sanity. It tears at our hearts when we see them suffering and can’t do anything to ease the pain. I know that I should not question God but sometimes I ask him “Why, why them?” I have learnt with a disease like this, we all have to be patient. I have seen my love ones suffering and doing and saying things that when they are able and somewhat healthy have no recollection of. They are called meanies when they are sick and you may want to lose patience with them, in the end they are not aware of what is going on around them and we just have to be patient.
Currently the only cure for Sickle Cell disease involves a bone marrow transplant and that has it’s pros and cons. It is a very long process with a lot of testing, finding donors and even the cost in itself is a lot. Essentially stem cell and bone marrow transplants are the same, but the cells are taken from the hip for a bone marrow and the cells are taken from the blood stream for a stem cell. Both the donor and the recipient has to go through a recovery stage and it is actually hard on both of them. There is a National Bone Marrow Registry but there are not many African Americans active in it, making the chance of someone getting that transplant very difficult unless one of their relatives would be willing to get tested to see if they are a match and even that may not always work. I really wish more research would be done for Sickle Cells on finding a cure. In the meantime, families and warriors, let us continue to fight the good fight no matter how hard it is.
This bit of news comes a little late for Sickle Cell Awareness Month, but it’s still important if you or someone you love lives with sickle cell disease:
Sickle cell disease patients and those who stand with them are invited to pre-register for free access to oneSCDvoice.com, an empowering online community launching in December.
Promoted as “A Sickle Cell Community Tailored to You,” oneSCDvoice will deliver trustworthy information to help people affected by sickle cell disease know more about it, learn of promising new treatments being tested in clinical trials (and how to access those new treatments as a clinical trial participant), more easily tap into needed support, and above all improve the quality of their lives.
oneSCDvoice.com is the creation of sickle cell healthcare providers, advocacy leaders, pharmaceutical manufacturer Pfizer, Inc. and health technology company rareLife solutions.
This collaborative digital education platform provides professionally vetted links to credible information about SCD, about lifestyle issues related to the disease, and about how to get more and better help coping with this devastating genetic condition.
Read full details at: http://www.prweb.com/releases/2017/11/prweb14939636.htm