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As a activist and a father of a son with sickle cell anemia, I ask why is sickle cell over looked?

As I reached out to many people in corporate America and the private sectors to help, by supporting sickle cell awareness and many other events to promote sickle cell. I would get 100% of no support.

I guess where it really hurts is when you ask of those that has helped many other causes but never one thin dime towards sickle cell, which makes this a up hill battle. Sickle cell is the oldest inherited disease in the world going back for millions of years. Science and the medical world knows very little worldwide about this disease. Each month in the United States is a month representing illnesses like Cancer, Aids , Diabetes and MS and sickle cell has a month that never gets any national attention unlike the other diseases. For some reason people refuse to want to know about sickle cell anemia even in the community that it mostly affects, like black people for example.

You can ask any well educated black person what do you know about sickle cell and in ten words you will get no answer, because of the lack of awareness of self in the black community about a disease that dominates in there community. Sickle cell is not just a black issue, their are many other races that have sickle cell anemia like people from India and all of the Latin countries and Arabs and Greeks to name a few. Sickle cell affects over a billion people worldwide and the numbers are growing in the last twenty five years of trait carriers and to the people that are born with this disease. In my travels as a activist for sickle cell. I have noticed a lack of knowledge in schools, churches and even hospitals. There has been a stigma attached for so long that people who have sickle cell are to shame to talk about it, yet people with aids, herpes or another disease that you catch and are not born with like sickle cell anemia, seem to speak out the loudest. I ask why is sickle cell over looked by rich African Americans that have proven to give to other causes except sickle cell anemia? I ask why is sickle cell over looked by the communities that have it? I ask why is sickle cell over looked by the parents that bring the children into the world? I ask why is sickle cell over looked by the media, health programs, health exhibits and talk shows? I wonder could this be the missing link to our unity. In my travels as a parent of a son with sickle cell. Living in many states in our nation. I have never heard or saw a group of concerned parents like myself standing as the voice for this illness that there love ones must deal with every day. I often wonder why are all the directors and ceo’s of the national sickle cell groups don’t have a love one with this illness or personally do not have it. I feel like it’s just a 9 - 5 job for them. They don’t come home to sickle cell. They don’t have the 4 am hospital trips to the emergency, or there child or love one experiencing a stroke, acute chest syndrome, a pain crises or blood transfusions. Why do you think there is no public service announcements ever? Not even in September, which is the so called “sickle cell awareness month”. Its very sad to say that we have four generations that do not know anything at all about sickle cell, but we have over 35 sickle cell association charters in our nation. It seems like to me the TRUTH is hidden by the people that should be the providers of the truth. I ask why is sickle cell over looked by the White House and community leaders? What are people so afraid of when it comes to showing love and support to people that suffer? Without any support or a mention of this illness in our nation on any level as I stated not even on its birthday in September. Sickle cell is like the child that never received love. I ask why is sickle cell over looked because its not a pop culture like aids or cancer because its not known to people’s awareness like the others? Or is because people don’t know that people rich or famous has and had this disease? Well, that’s not true! The young people know of T-boz of the singing group TLC, Miles Davis and also Paul Williams of the Temptations and many other celebrities that will not stand up for the cause because of their shame. I guess let the truth be told that King Tut died from sickle cell anemia in 13BC. So, again I ask why is sickle cell over looked and when will people start learning about this disease? Their is a break through on the horizon on a cure coming that is in clinical trials by the sickle cell cure foundation under the leadership of Dr. Robert Broyles in Oklahoma City, Oklahoma, yet people refuse to donate. Please support to help keep the clinical trials going so this cure can come to market and billions of people will not have to suffer from such a painful disabling disease that millions of you know very little about. Think of 80 to 90 razors inside your body and this is some of the pain that people with sickle cell experience. Again, I ask why is sickle cell over looked?

I hope that you can make a change and stand with me to combat sickle cell anemia and make a great difference in the lives of many that are suffering with this disease. I think the lack of knowledge is stopping the key to our unity.


Wriiten by J R PERRY


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