I recently wrote about adding more content to this blog. Camp Crescent Moon is the oldest Sickle Cell Camp in the US. What's so unique is it has survived all of these years because of corporate contributions and individual donors who understand the hardship SCD presents to our youth.
My eyes were opened to barriers faced by our youth when I worked in Philadelphia, PA in the Pharmaceutial industry and visited the clinic and hematology floor at Chilren Hospital. What I noticed were children who wanted to enjoy camp with children who are like them. So, below is a link which will allow you to give support to "Camp Crescent Moon".
http://www.firstgiving.com/fundraiser/patriceragin/campwalk
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Sunday, March 4, 2012
Sunday, February 12, 2012
Powerful Spoken Words About Pain...Sickle Cell Anemia
Russell Simmons "Young Voices" once again highlights Jasmine Baily's powerful spoken word on coping with pain affecting those with Sickle Cell Disease. Enough said!
http://www.youtube.com/watch?v=1OKkzFlWvbA
http://www.youtube.com/watch?v=1OKkzFlWvbA
Thursday, February 9, 2012
No One Should Be Alone
On Facebook a colleague ("Mindful Heart for Sickle Cell"), posed a question relating to being hospitalized alone and with no family or friends by your side. It sheds light on many facets of our life such as; despair, self worth, and contiuous unhappines. If we are fortunate we have family members and or friends who are concerned and understand our disease, willing to be by our side to comfort and encourage us. Some of us are so unappreciative that we run those who care about us away. We must be mindful that others give to us from their heart.
When I was a youth I knew that my family was there for me. Although I didn't know I had SCA. My parents would always say I was anemic but not that I had SCD. When I would hurt they and my brothers would rub my aches and help me get my mind off the crisis by singing to me or helping me imagine my victories over the pain. I say this because other than college and my first job, I can't remember when I was alone and checked myself into a hospital. After getting married in 1981, I have never been alone. My wife has always been by my side. Between her and my father they have slept in the same room with me on every admission. That's love and devotion. And I thank God for it.
Back to my comment regarding "being alone". I wrote on the Mindful Heart webpage, "My family talks about this all the time when I am hospitalized by a Crises. My wife is a big proponent of looking out for care givers and realizing who has little or know support. When I feel better, I try and talk with patients who are willing. I am careful to assume a patient has SCD and sometimes that's a problem because a lot of us are not willing to talk about our disease in the public domain." Therefore, I do feel there are a lot of us out there who can have a much richer and more meaningful life if we seek each other out.
One more comment. If there is no one with the patient how do they know they are getting proper treatment? This is not to say that those of us who have SCD don't get proper treatment in hospitals yet we've all had opportunites to question our care. Typically the patient is concerned with pain management and not necessarily with other treatments and testing. My family motto has been, "caregivers watch the caregivers" because who cares more about you? This is why I strongly suggest the we visit each other, talk to each other and pray for each other. No one should be alone.
When I was a youth I knew that my family was there for me. Although I didn't know I had SCA. My parents would always say I was anemic but not that I had SCD. When I would hurt they and my brothers would rub my aches and help me get my mind off the crisis by singing to me or helping me imagine my victories over the pain. I say this because other than college and my first job, I can't remember when I was alone and checked myself into a hospital. After getting married in 1981, I have never been alone. My wife has always been by my side. Between her and my father they have slept in the same room with me on every admission. That's love and devotion. And I thank God for it.
Back to my comment regarding "being alone". I wrote on the Mindful Heart webpage, "My family talks about this all the time when I am hospitalized by a Crises. My wife is a big proponent of looking out for care givers and realizing who has little or know support. When I feel better, I try and talk with patients who are willing. I am careful to assume a patient has SCD and sometimes that's a problem because a lot of us are not willing to talk about our disease in the public domain." Therefore, I do feel there are a lot of us out there who can have a much richer and more meaningful life if we seek each other out.
One more comment. If there is no one with the patient how do they know they are getting proper treatment? This is not to say that those of us who have SCD don't get proper treatment in hospitals yet we've all had opportunites to question our care. Typically the patient is concerned with pain management and not necessarily with other treatments and testing. My family motto has been, "caregivers watch the caregivers" because who cares more about you? This is why I strongly suggest the we visit each other, talk to each other and pray for each other. No one should be alone.
Tuesday, January 31, 2012
A Time of Renewal
I hope all of you had a happy holiday season. I certainly enjoyed mine. What I was most appreciative of was my family being home during the holidays. To see the smiles on the faces of my parents as their children's children rekindled relationships moved my spirit. Yet, I right this blog not to pass on my feelings all the time but to inform and generate topics of concern and discussion.
After the holidays I was hospitalized due to a fever of an unknown origin. This really knocked me on my back but it also allowed me to think about what could be done to make this blog more attractive to the reader. What I decided was to add more content.
I received an email from the Sickle Cell Disease Foundation of California (SCDFC) regarding a concert given by Celine Dion for Boston University Medical Center to benefit their Sickle Cell Anemia program. The benefit concert was held at Caesars Palace in Las Vegas. While delighted that someone of her celebrity status would give of their time to benefit a primarily African American disease, it made me wonder where are the Black celebrities on the issue of advocacy and finding a cure.
For many years those of us who suffer from Sickle Cell Anemia have wondered why our celebrities (athletes and entertainers) have refused to donate real dollars to programs and foundations across the country. This disassociation has left many to discount the funding sources in the African American community. So, does a Celine Dion benefit concert energize us to give or galvanize the tensions preventing real contributions from African Americans?
Thank you Celine for your concert and your advocacy. Hopefully this will begin much needed conversation in the Sickle Cell community.
Click on the link below to view an article and footage of the concert.
http://www.multivu.com/mnr/54153-celine-dion-play-without-pain-children-s-sickle-cell-benefit
After the holidays I was hospitalized due to a fever of an unknown origin. This really knocked me on my back but it also allowed me to think about what could be done to make this blog more attractive to the reader. What I decided was to add more content.
I received an email from the Sickle Cell Disease Foundation of California (SCDFC) regarding a concert given by Celine Dion for Boston University Medical Center to benefit their Sickle Cell Anemia program. The benefit concert was held at Caesars Palace in Las Vegas. While delighted that someone of her celebrity status would give of their time to benefit a primarily African American disease, it made me wonder where are the Black celebrities on the issue of advocacy and finding a cure.
For many years those of us who suffer from Sickle Cell Anemia have wondered why our celebrities (athletes and entertainers) have refused to donate real dollars to programs and foundations across the country. This disassociation has left many to discount the funding sources in the African American community. So, does a Celine Dion benefit concert energize us to give or galvanize the tensions preventing real contributions from African Americans?
Thank you Celine for your concert and your advocacy. Hopefully this will begin much needed conversation in the Sickle Cell community.
Click on the link below to view an article and footage of the concert.
http://www.multivu.com/mnr/54153-celine-dion-play-without-pain-children-s-sickle-cell-benefit
Sunday, December 18, 2011
A THANKFUL NOTE ...THIS YEAREND
I am so excited this Christmas. I am of reasonable health and most importantly I have all of my family home or planning to be home by Christmas day. I truly hope you are blessed with your family as I am.
I was hospitalized last week for Sickle Crisis. You see there are so many illnesses I have that I am just thankful for being here. When the nurses are changing shifts and giving bedside reports it is rather comical to me. They say; he has Sickle Cell Anemia, End Stage Renal Disease, Rheumatoid Arthritis, Congestive Heart Failure, Atrial Fibrillation, and Neuropathy. They look at each other as if to say, why is this man still alive. I look at them and say thanks to the caregivers I have beaten the odds given to a male with Sickle Cell Disease.
By the grace of God and many prayers, I have this steadfastness and appreciation for the many illnesses I have to deal with. I don't take any of them for granted. I thank my doctors for understanding me and my desire to beat all odds. Their ability and desire to treat me as a "special patient" allows me to feel the need to fight and never give up. But most importantly my family gives me the way forward with these diseases. You see, from the time I was a little boy asking my parents to rub my sore arms and legs until the time my precious wife told me don't think about leaving us I have promised to make the best of the moment.
Isn't it wonderful to awaken each day listening to my brother as he prays for me and my health. Isn't it wonderful to know how much you are loved by your family as they take care of me. Isn't it wonderful to go a dialysis center where the nursing staff cares about how you feel. I could mention many more unique and wonderful events in my life; however, the most important event is how you live your life in the present, not the past or the future.
So enjoy the holiday spirit. May you be healthy and in the right frame of mind to enjoy your family, your caregivers and friends. Appreciate all of the prayers for you from those you will never meet.
Happy Holidays!
I was hospitalized last week for Sickle Crisis. You see there are so many illnesses I have that I am just thankful for being here. When the nurses are changing shifts and giving bedside reports it is rather comical to me. They say; he has Sickle Cell Anemia, End Stage Renal Disease, Rheumatoid Arthritis, Congestive Heart Failure, Atrial Fibrillation, and Neuropathy. They look at each other as if to say, why is this man still alive. I look at them and say thanks to the caregivers I have beaten the odds given to a male with Sickle Cell Disease.
By the grace of God and many prayers, I have this steadfastness and appreciation for the many illnesses I have to deal with. I don't take any of them for granted. I thank my doctors for understanding me and my desire to beat all odds. Their ability and desire to treat me as a "special patient" allows me to feel the need to fight and never give up. But most importantly my family gives me the way forward with these diseases. You see, from the time I was a little boy asking my parents to rub my sore arms and legs until the time my precious wife told me don't think about leaving us I have promised to make the best of the moment.
Isn't it wonderful to awaken each day listening to my brother as he prays for me and my health. Isn't it wonderful to know how much you are loved by your family as they take care of me. Isn't it wonderful to go a dialysis center where the nursing staff cares about how you feel. I could mention many more unique and wonderful events in my life; however, the most important event is how you live your life in the present, not the past or the future.
So enjoy the holiday spirit. May you be healthy and in the right frame of mind to enjoy your family, your caregivers and friends. Appreciate all of the prayers for you from those you will never meet.
Happy Holidays!
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