Now that you’ve decided that letting people know you have Sickle Cell Disease isn’t something to be ashamed of, you might wonder how to talk with people about it. First, understand your friends and family care about you. It’s natural for them to be curious about your health and ask questions. Learning to speak with others about your illness plays a big roll in learning to live with it.
When talking with others about your health, make the choice to not be offended by people’s natural curiosity. Below is a list of the four questions I’m most often asked about Sickle Cell, and how I personally answer them. I could easily choose to be offended by the boldness of some individuals and the questions they ask. Instead, I use that opportunity to educate. As you read this section, think about how you would answer these same questions if and when you’re asked.
Showing posts with label 08) How to Talk with People. Show all posts
Showing posts with label 08) How to Talk with People. Show all posts
Sunday, December 9, 2012
“How Does Sickle Cell Anemia Affect Your Life?”
This is probably the number one question I’m asked. It’s a little bit like asking the Earth, “How does the Sun affect you?” The answer is of course, “In every way.” In answering this question, I detail some of ways in which Sickle Cell impacts my body and life as a whole. The truth is, unless the person does have, or has had, some kind of illness themselves, they won’t be able to fully identify with what you endure. However, just because somebody can’t 100% relate to what you are going through, it doesn’t mean they can’t be supportive. The companionship of a caring friend can be of great comfort.
"What Treatments Are Available?"
Though I explain treatments such as blood transfusions and various medications help in a variety of ways, for me, preventive medicine is the best treatment. Learning to manage my disease and knowing my limits are generally what keeps me out of the hospital. This is one of my highest priorities in life, doing everything I can to keep myself as healthy as possible: mind, body, and spirit.
"Is There a Cure?"
Currently, there is not a blanket cure available to every single man, woman, and child who lives with Sickle Cell. However, for those who meet the requirements, there is an 85% cure rate for patients that have a bone marrow transplant from a direct sibling who doesn’t have Sickle Cell. A direct sibling means, a brother or sister who has the same mom and dad as you. They can‘t be half-brothers or sisters.
Bone marrow is basically the red blood cell factory of the body. It’s the soft chewy center of the bone where red blood cells are made (I was joking about the chewy part). When a transplant occurs, a certain amount of stem cells—which are immature cells—are withdrawn from the bone marrow of a healthy donor; these cells are usually taken from the hip or harvested from the donor’s blood. . The patient receiving the donor stem cells does so intravenously, much like a blood transfusion. If it’s successful, the patient’s bone marrow essentially resets, allowing their body to produce healthy red blood cells. Simply stated, the factory where the Sickle Cell patient’s bloods cells are produced gets a new operating system. This is an oversimplification of a very complex medical procedure, but you get the idea.
Though there is an 85% cure rate in bone marrow transplant treatment in Sickle Cell patients, there is a 5% chance that it can result in the death of the patient. The remaining 10% survive without the treatment being successful. Due to the risks involved, there are many requirements for the procedure. The patient cannot have any damage to their major organs; they must be under seventeen years old; live with the more severe form of Sickle Cell; and they must have a sibling able to donate bone marrow. All of these requirements make bone marrow transplant a possibility for a very small percentage of patients.
In recent years, there have been successful bone marrow transplants from donors that were not at all related to the Sickle Cell patient. Currently advancements are being made in bone marrow transplants that will make the procedure available to adults as well as youth. Additional research with stem cells is also opening doors to potential treatments and cures.
Dr. Broyles, the founder of the Sickle Cell Cure Foundation Inc., is a researcher whose making very exciting progress toward an inexpensive non-surgical cure for all Sickle Cell patients through what he calls gene regulation therapy. By injecting a protein into the bloodstream, Dr. Broyles believes his treatment will turn off the Sickle Cell gene and turn on the fetal hemoglobin gene; the gene that protects infants and fetuses in their mother’s womb from suffering the affects of Sickle Cell. The foundation is working towards having clinical trials and expect the treatment to be available in the near future. More information about this can be found on his website at www.sicklecellcurefoundation.org.
Personally, I’m very hopeful about future developments toward curing Sickle Cell Disease. Though limited, there is a cure today. This was but dream only thirty years ago. Living with the belief that a cure for all will come in our lifetime, is an important one to have. Maintain that hope.
Bone marrow is basically the red blood cell factory of the body. It’s the soft chewy center of the bone where red blood cells are made (I was joking about the chewy part). When a transplant occurs, a certain amount of stem cells—which are immature cells—are withdrawn from the bone marrow of a healthy donor; these cells are usually taken from the hip or harvested from the donor’s blood. . The patient receiving the donor stem cells does so intravenously, much like a blood transfusion. If it’s successful, the patient’s bone marrow essentially resets, allowing their body to produce healthy red blood cells. Simply stated, the factory where the Sickle Cell patient’s bloods cells are produced gets a new operating system. This is an oversimplification of a very complex medical procedure, but you get the idea.
Though there is an 85% cure rate in bone marrow transplant treatment in Sickle Cell patients, there is a 5% chance that it can result in the death of the patient. The remaining 10% survive without the treatment being successful. Due to the risks involved, there are many requirements for the procedure. The patient cannot have any damage to their major organs; they must be under seventeen years old; live with the more severe form of Sickle Cell; and they must have a sibling able to donate bone marrow. All of these requirements make bone marrow transplant a possibility for a very small percentage of patients.
In recent years, there have been successful bone marrow transplants from donors that were not at all related to the Sickle Cell patient. Currently advancements are being made in bone marrow transplants that will make the procedure available to adults as well as youth. Additional research with stem cells is also opening doors to potential treatments and cures.
Dr. Broyles, the founder of the Sickle Cell Cure Foundation Inc., is a researcher whose making very exciting progress toward an inexpensive non-surgical cure for all Sickle Cell patients through what he calls gene regulation therapy. By injecting a protein into the bloodstream, Dr. Broyles believes his treatment will turn off the Sickle Cell gene and turn on the fetal hemoglobin gene; the gene that protects infants and fetuses in their mother’s womb from suffering the affects of Sickle Cell. The foundation is working towards having clinical trials and expect the treatment to be available in the near future. More information about this can be found on his website at www.sicklecellcurefoundation.org.
Personally, I’m very hopeful about future developments toward curing Sickle Cell Disease. Though limited, there is a cure today. This was but dream only thirty years ago. Living with the belief that a cure for all will come in our lifetime, is an important one to have. Maintain that hope.
“How Long Do People with Sickle Cell Live?”
This last question is one I am generally asked by people who are either particularly close to me or especially outgoing. It’s a topic I’m comfortable talking about and it doesn’t bother me when asked the question. It would be easy to be sarcastic and say, “I don’t know, how long are you going to live?” But sarcasm doesn’t help educate people.
When I was born in 1973—back when I had to walk up hill both ways, in three feet of snow, barefoot, and with nothing to wear but a potato sack—children born with Sickle Cell Anemia in the United States generally lived to be seven to twelve years old. As I have grown up, I’ve watched as that young age increased to be twenty years old, then thirty years old, and up to where it is today, forty to sixty years old. What a joy it is to know, if I live responsibly and take care of my health, that I could live nearly a full life!
If you do an Internet search of, “oldest living person with Sickle Cell Disease,” you will find some inspiring information. In the United States there is a woman who is eighty-five years old; in Nigeria there are references about an eighty-seven year old woman; both are living with Sickle Cell Disease. I have to admit, the first time I read the article about a woman in her eighties who’s living with Sickle Cell, it blew my mind. Think of the hope the life of those two women bring to everyone living with our illness.
Currently I am thirty-nine years old. When I was a child, I never dreamed I‘d live to be the age I am. In this case, what a delight it has been to be wrong, and how thrilling it is to think I could live another fifty years. Living with Sickle Cell Anemia is hard, there’s no doubt about that. Admittedly, there are moments when the complications and pain of Sickle Cell cause me to want to leave this life and cross over to the next; but those are moments, and they pass. Believe me when I say, there is joy greater than the pain you endure. Life is worth living.
When you are talking with others, if somebody asks you the, “how long will you live” question, choose not to take offense. Rather, take the opportunity to enlighten them. Tell them how short of a life children born with Sickle Cell use to have, verses how long you can live today if you take care of your body. Tell them about the women who are in their eighties. Tell them you expect to live a long full life. Your friends will share in that joy with you.
When I was born in 1973—back when I had to walk up hill both ways, in three feet of snow, barefoot, and with nothing to wear but a potato sack—children born with Sickle Cell Anemia in the United States generally lived to be seven to twelve years old. As I have grown up, I’ve watched as that young age increased to be twenty years old, then thirty years old, and up to where it is today, forty to sixty years old. What a joy it is to know, if I live responsibly and take care of my health, that I could live nearly a full life!
If you do an Internet search of, “oldest living person with Sickle Cell Disease,” you will find some inspiring information. In the United States there is a woman who is eighty-five years old; in Nigeria there are references about an eighty-seven year old woman; both are living with Sickle Cell Disease. I have to admit, the first time I read the article about a woman in her eighties who’s living with Sickle Cell, it blew my mind. Think of the hope the life of those two women bring to everyone living with our illness.
Currently I am thirty-nine years old. When I was a child, I never dreamed I‘d live to be the age I am. In this case, what a delight it has been to be wrong, and how thrilling it is to think I could live another fifty years. Living with Sickle Cell Anemia is hard, there’s no doubt about that. Admittedly, there are moments when the complications and pain of Sickle Cell cause me to want to leave this life and cross over to the next; but those are moments, and they pass. Believe me when I say, there is joy greater than the pain you endure. Life is worth living.
When you are talking with others, if somebody asks you the, “how long will you live” question, choose not to take offense. Rather, take the opportunity to enlighten them. Tell them how short of a life children born with Sickle Cell use to have, verses how long you can live today if you take care of your body. Tell them about the women who are in their eighties. Tell them you expect to live a long full life. Your friends will share in that joy with you.
Finding People to Talk to
Talking with friends and family about the things you’re going through can be of great comfort. However, despite how much a friend may care, sometimes talking with another person who lives with Sickle Cell is more beneficial. Fortunately, there are people out there who can help.
SUPPORT GROUPS
A support group is where other people who live with Sickle Cell meet together. It’s a place where you can talk with others who experience similar difficulties as you. Learning how others manage their illness, talking with people who understand the pain and share common struggles can help in the coping process. If you’re interested in finding a support group for Sickle Cell patients, ask your doctor about it the next time you see him. He, or somebody on his staff, will be able to help you locate one. You can also look online by typing in “Sickle Cell support groups” and the city or State you live in and see what you find.
SICKLE CELL ORGANIZATIONS
Sickle Cell Organizations are spread throughout the country. They may offer summer camp, provide counseling, support, or a variety of other services and activities for youth and families. If nothing else, you may be able to find a new friend who understands what it’s like to live with Sickle Cell Disease. Again, ask your doctor for information about a Sickle Cell Organization in your area or do an online search with your parents.
SOCIAL NETWORKS
If joining a support group or becoming involved in a Sickle Cell Organization doesn’t interest you, perhaps being part of an online forum might. On a forum, or other social networks, you can read what others have written who are enduring similar things you are. You can also post questions and see what kind of response you get. You may be able to help somebody in need by sharing your life experiences. Forums can be both informative and emotionally moving.
CHURCH
Faith, religion, spirituality, and the friendships you form in your church-going activities can be a powerful source of strength and comfort. As a result of the love I constantly received from friends at church, and because my family life was/is so good, I never wanted for any other kind of support group. Not everyone has that. Everybody’s life circumstance is different. Church can be a place where you can find a network of friends who can help provide the strength and fellowship you need. You may even find somebody in the congregation who also has Sickle Cell.
SUPPORT GROUPS
A support group is where other people who live with Sickle Cell meet together. It’s a place where you can talk with others who experience similar difficulties as you. Learning how others manage their illness, talking with people who understand the pain and share common struggles can help in the coping process. If you’re interested in finding a support group for Sickle Cell patients, ask your doctor about it the next time you see him. He, or somebody on his staff, will be able to help you locate one. You can also look online by typing in “Sickle Cell support groups” and the city or State you live in and see what you find.
SICKLE CELL ORGANIZATIONS
Sickle Cell Organizations are spread throughout the country. They may offer summer camp, provide counseling, support, or a variety of other services and activities for youth and families. If nothing else, you may be able to find a new friend who understands what it’s like to live with Sickle Cell Disease. Again, ask your doctor for information about a Sickle Cell Organization in your area or do an online search with your parents.
SOCIAL NETWORKS
If joining a support group or becoming involved in a Sickle Cell Organization doesn’t interest you, perhaps being part of an online forum might. On a forum, or other social networks, you can read what others have written who are enduring similar things you are. You can also post questions and see what kind of response you get. You may be able to help somebody in need by sharing your life experiences. Forums can be both informative and emotionally moving.
CHURCH
Faith, religion, spirituality, and the friendships you form in your church-going activities can be a powerful source of strength and comfort. As a result of the love I constantly received from friends at church, and because my family life was/is so good, I never wanted for any other kind of support group. Not everyone has that. Everybody’s life circumstance is different. Church can be a place where you can find a network of friends who can help provide the strength and fellowship you need. You may even find somebody in the congregation who also has Sickle Cell.
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