About Me
- TahirahAkilah (SCD Warrior)
- Simple but complex, intelligent but idiotic, lover but a fighter!!! I have Sickle Cell Disease....but Sickle Cell Disease does not have ME!!
Monday, January 31, 2011
The Camp Organization that I adore: Dragonfly Forest...check out the news clip!
http://abclocal.go.com/wpvi/video?id=7570179 For more information about volunteering, donating, or becoming a friend of Dragonfly Forest go to http://www.dragonflyforest.org/ or email me at tahirah.austin@yahoo.com.
Black History Month: Facts About Sickle Cell Disease
Since we celebrate Black History Month in February, I thought it would be cool to give some facts about Sickle Cell Disease; being as it's been dubbed the nickname "The Forgotten Disease".
This disease shouldn't be forgotten when in fact it is a "Global Disease"; it affects so many people in the world and so many black people in the United States. Many people carry the gene for Sickle Cell Disease and don't even know it, or they find out when they have a child diagnosed with Sickle Cell Disease.
So starting tomorrow and throughout the month of February, there will be cool, enlightening facts about SCD posted!
Feel free to post your own facts about SCD!
This disease shouldn't be forgotten when in fact it is a "Global Disease"; it affects so many people in the world and so many black people in the United States. Many people carry the gene for Sickle Cell Disease and don't even know it, or they find out when they have a child diagnosed with Sickle Cell Disease.
So starting tomorrow and throughout the month of February, there will be cool, enlightening facts about SCD posted!
Feel free to post your own facts about SCD!
Friday, January 28, 2011
Some Sickle Cell Disease History! Get Educated!
Although the HbS gene is most common in Africa, sickle cell disease went unreported in African medical literature until the 1870s. This may be because the symptoms were similar to those of other tropical diseases in Africa and because blood was not usually examined. In addition, children born with sickle cell disease usually died in infancy and were typically not seen by physicians. Most of the earliest published reports of the disease involved black patients living in the US.
African tribal populations were all too familiar with the disease and created their own names for it. It is interesting to note that the tribal names all carry repeating syllables -- possibly to symbolize the repeating painful episodes. Such names include ahututuo (from the Twi tribe); chwecheechwe (from the Ga tribe); nuidudui (from the Ewe tribe); and nwiiwii (from the Fante tribe). Many tribal names were also imitations of the cries and moans of the sufferers or formed such phrases as "body chewing" or "body biting" which described their terrible torment. In one West African tribe, children who died soon after birth were called "ogbanjes" meaning children who come and go. The tribespeople believed that an evil spirit was trying to be born into a family with ogbanje children, but the babies bravely died to save the rest of the family from the demon. Some tribes had as many as 40% of the people carry the sickle cell gene.
In the US in 1846, a paper entitled "Case of Absence of the Spleen" (from the Southern Journal of Medical Pharmacology), was probably the first to describe sickle cell disease. It discussed the case of a runaway slave who had been executed. His body was autopsied and found to have "the strange phenomenon of a man having lived without a spleen." Although the slave's condition was typical, the doctor had no way of knowing this as the disease had not yet been "discovered." The first formal report of sickle cell disease came out of Chicago about 50 years later, in 1910. In 1922, after three more cases were reported, the disease was named "sickle cell anemia."
In 1904, Dr. James Herrick reported "peculiar elongated and sickle shaped" red blood cells in "an intelligent negro of 20." These sickled cells were discovered by a hospital intern, Dr. Ernest Irons, who examined the patient's blood and sketched the strange cells. The patient had come to Dr. Herrick with complaints of shortness of breath, heart palpitations, abdominal pain, and aches and pains in his muscles. He also felt tired all the time, had headaches, experienced attacks of dizziness, and had ulcers on his legs. After noting these symptoms, the doctor took samples of his blood.
This first sickle cell patient had come to Chicago in 1904 to study dentistry in one of the best schools of the country and was likely the only black student there. He was a weathy man from the West Indies; and, despite repeated hospitalizations for his illness, Walter Clement Noel completed his training, along with his classmates, three years later. He returned to Grenada and practised dentistry until he died of pneumonia at the age of 32. Although the disease does not distinguish between the rich and the poor, it does single out those from the tropical and subtropical climates of the Old World.
One long-held theory as to why it was so common in the tropics was its association with malaria. In the 1940s, E.A.Beet, a British medical officer stationed in Northern Rhodesia (now Zimbabwe), observed that blood from malaria patients who had sickle cell trait had fewer malarial parasites than blood from patients without the trait. Following this observation, a physician in Zaire reported that there were fewer cases of severe malaria among people with sickle cell trait than among those without it.
In 1954, Anthony Allison, continued to build on these observations and hypothesized that sickle cell trait offered protection against malaria. He suggested that those with the trait did not succumb to malaria as often as those without it; but, when they did, their disease was less severe. It is now known that, when invaded by the malarial parasite, normally stable red cells of someone with the sickle cell trait can sickle in a low oxygen environment (like the veins). The sickling process destroys the invading organism and prevents it from spreading through the body. This apparent ability of a genetic condition to protect carriers is particularly important in infants. Thus, in regions repeatedly devastated by malaria, people who carry the sickle cell trait will have a greater chance for survival than other individuals.
In the following years, evidence began to collect in support of this theory as well as some against it. When studies were restricted to young people, the hypothesis held -- the sickle cell trait did offer protection to children but not to adults since they were unable to develop antibodies to the malarial parasite. However, even though their immunity was partial, it did help them to survive but offered little additional advantage. Since the youngsters were not able to produce antibodies to the malarial parasite until their immune systems matured, it was the pre-immune malarial patients whose survival was protected by sickle cell trait. For them as well, although protection was only partial, they did survive longer. Since then, several studies of malarial epidemics have revealed a higher survival rate for sickle cell trait individuals than for those who lack the gene HbS. These study areas included geographical distribution, gene frequency, and transgenic mice (the transportation of genes from one species into another).
An English neurologist, Lord Brain, once suggested that although a double dose of the sickle cell gene could be fatal, a single gene might increase a person's resistance to a disease. As more research was done, it was discovered that he was right, especially when it came to malaria. However, only those with sickle cell trait, not the disease, are protected against malaria. Those with sickle cell disease would either die from the blood disorder or die after coming into contact with malaria because of their weakened immune systems. But if someone with sickle cell trait contracts malaria, the person's body is somehow shielded from this potentially fatal disease.
Scientists have found that the red blood cells of people with sickle cell trait break down quickly when the malaria parasite attacks them. Since the parasite must grow inside red blood cells, the disease does not have a chance to become firmly established. However, not everyone with sickle cell trait is protected either. Apparent resistance to the disease occurs only in children between the ages of two and four.
Studies have shown that African Americans, who have lived in malaria-free areas for as long as ten generations, have lower sickle cell gene frequencies than Africans -- and the frequencies have dropped more than those of other, less harmful African genes. Similarly, the sickle cell gene is less common among blacks in Curacao, a malaria-free island in the Caribbean, than in Surinam, a neighboring country where malaria is rampant -- even though the ancestors of both populations came from the same region of Africa.
There are several theories as to why people with sickle cell trait have milder cases of malaria. This has to do with their being a host to fewer and weaker parasites.
African tribal populations were all too familiar with the disease and created their own names for it. It is interesting to note that the tribal names all carry repeating syllables -- possibly to symbolize the repeating painful episodes. Such names include ahututuo (from the Twi tribe); chwecheechwe (from the Ga tribe); nuidudui (from the Ewe tribe); and nwiiwii (from the Fante tribe). Many tribal names were also imitations of the cries and moans of the sufferers or formed such phrases as "body chewing" or "body biting" which described their terrible torment. In one West African tribe, children who died soon after birth were called "ogbanjes" meaning children who come and go. The tribespeople believed that an evil spirit was trying to be born into a family with ogbanje children, but the babies bravely died to save the rest of the family from the demon. Some tribes had as many as 40% of the people carry the sickle cell gene.
In the US in 1846, a paper entitled "Case of Absence of the Spleen" (from the Southern Journal of Medical Pharmacology), was probably the first to describe sickle cell disease. It discussed the case of a runaway slave who had been executed. His body was autopsied and found to have "the strange phenomenon of a man having lived without a spleen." Although the slave's condition was typical, the doctor had no way of knowing this as the disease had not yet been "discovered." The first formal report of sickle cell disease came out of Chicago about 50 years later, in 1910. In 1922, after three more cases were reported, the disease was named "sickle cell anemia."
In 1904, Dr. James Herrick reported "peculiar elongated and sickle shaped" red blood cells in "an intelligent negro of 20." These sickled cells were discovered by a hospital intern, Dr. Ernest Irons, who examined the patient's blood and sketched the strange cells. The patient had come to Dr. Herrick with complaints of shortness of breath, heart palpitations, abdominal pain, and aches and pains in his muscles. He also felt tired all the time, had headaches, experienced attacks of dizziness, and had ulcers on his legs. After noting these symptoms, the doctor took samples of his blood.
This first sickle cell patient had come to Chicago in 1904 to study dentistry in one of the best schools of the country and was likely the only black student there. He was a weathy man from the West Indies; and, despite repeated hospitalizations for his illness, Walter Clement Noel completed his training, along with his classmates, three years later. He returned to Grenada and practised dentistry until he died of pneumonia at the age of 32. Although the disease does not distinguish between the rich and the poor, it does single out those from the tropical and subtropical climates of the Old World.
One long-held theory as to why it was so common in the tropics was its association with malaria. In the 1940s, E.A.Beet, a British medical officer stationed in Northern Rhodesia (now Zimbabwe), observed that blood from malaria patients who had sickle cell trait had fewer malarial parasites than blood from patients without the trait. Following this observation, a physician in Zaire reported that there were fewer cases of severe malaria among people with sickle cell trait than among those without it.
In 1954, Anthony Allison, continued to build on these observations and hypothesized that sickle cell trait offered protection against malaria. He suggested that those with the trait did not succumb to malaria as often as those without it; but, when they did, their disease was less severe. It is now known that, when invaded by the malarial parasite, normally stable red cells of someone with the sickle cell trait can sickle in a low oxygen environment (like the veins). The sickling process destroys the invading organism and prevents it from spreading through the body. This apparent ability of a genetic condition to protect carriers is particularly important in infants. Thus, in regions repeatedly devastated by malaria, people who carry the sickle cell trait will have a greater chance for survival than other individuals.
In the following years, evidence began to collect in support of this theory as well as some against it. When studies were restricted to young people, the hypothesis held -- the sickle cell trait did offer protection to children but not to adults since they were unable to develop antibodies to the malarial parasite. However, even though their immunity was partial, it did help them to survive but offered little additional advantage. Since the youngsters were not able to produce antibodies to the malarial parasite until their immune systems matured, it was the pre-immune malarial patients whose survival was protected by sickle cell trait. For them as well, although protection was only partial, they did survive longer. Since then, several studies of malarial epidemics have revealed a higher survival rate for sickle cell trait individuals than for those who lack the gene HbS. These study areas included geographical distribution, gene frequency, and transgenic mice (the transportation of genes from one species into another).
An English neurologist, Lord Brain, once suggested that although a double dose of the sickle cell gene could be fatal, a single gene might increase a person's resistance to a disease. As more research was done, it was discovered that he was right, especially when it came to malaria. However, only those with sickle cell trait, not the disease, are protected against malaria. Those with sickle cell disease would either die from the blood disorder or die after coming into contact with malaria because of their weakened immune systems. But if someone with sickle cell trait contracts malaria, the person's body is somehow shielded from this potentially fatal disease.
Scientists have found that the red blood cells of people with sickle cell trait break down quickly when the malaria parasite attacks them. Since the parasite must grow inside red blood cells, the disease does not have a chance to become firmly established. However, not everyone with sickle cell trait is protected either. Apparent resistance to the disease occurs only in children between the ages of two and four.
Studies have shown that African Americans, who have lived in malaria-free areas for as long as ten generations, have lower sickle cell gene frequencies than Africans -- and the frequencies have dropped more than those of other, less harmful African genes. Similarly, the sickle cell gene is less common among blacks in Curacao, a malaria-free island in the Caribbean, than in Surinam, a neighboring country where malaria is rampant -- even though the ancestors of both populations came from the same region of Africa.
There are several theories as to why people with sickle cell trait have milder cases of malaria. This has to do with their being a host to fewer and weaker parasites.
- The parasite inside the red cell produces acid. In the presence of acid, HbS has a tendency to polymerize which causes the cells to sickle. Since sickled cells are destroyed as the blood circulates through the spleen, the parasites are destroyed as well.
- Malarial parasites do not live long under low oxygen conditions. Since the oxygen concentration is low in the spleen, and since infected red cells tend to get trapped in the spleen, they may be killed there.
- Another thing that happens under low oxygen conditions is that potassium leaks out of HbS-containing cells. The parasite needs high potassium levels to develop. This may be the reason the parasite fails to thrive in red blood containing Hb S.
Thursday, January 27, 2011
My Terrifying, Horrible, Eye Opening, Overseas Crisis!!
So, this past Christmas (2010) I went on vacation with my family to Trinidad. I had a BALL, as always when I go HOME! This time we stayed for 2 whole weeks, so it really felt like a vacation. Anyway, Christmas Eve I wasn't feeling well. I woke up with some pain, but nothing I wasn't used to handling on my own. I came prepared (so I thought), had ALL MY NARCOTICS with me; you name it, I had it. From oxycontin and percocet to motrin and tylenol with codeine (which does nothing for me), but I had it with me, just in case.
I started my pain management like normal, taking 1 percocet every two hours until my pain subsided. Well, it didn't, it only got worse, so I moved on to oxycontin. After a few hours it only got worse, so bad I was crying (people that know me well, know that I'm not a cryer) because my pain was unbearable. So my parents at this point are concerned because I can usually handle a pain crisis at home. In the states (back home) I don't go to the ER unless I have Acute Chest Syndrome or some type of infection.
My Mom asked me did I feel like I needed to go to the hospital, I told her yes, I wanted to say "HELL YEA, What you think?"; but it's my Mom, sooooo....I calmly told her, yes. She was concerned because she wasn't sure how the healthcare in Trinidad was since she hasn't lived there for years, obviously.
My Mom called my Aunt, who wanted to take me to her Private Doctor, but he said to take me to the local hospital. So my Aunt called the ambulance, they arrived quickly.......and the experience begun!!!
Ambulance Man: whats wrong?
My Mom: She's having a Sickle Cell Crisis
Ambulance Man: A what?
Me: A crisis
Ambulance Man: Mam, you have to ride in the front.
My Mom: Ok, but do you understand whats going on with my daughter
Ambulance Man: She'll be ok
He puts me in the back of the Ambulance, and begins asking me questions, like normal (so I thought).
Ambulance Man:When did you get Sickle Cell?
Me: HUH?
Ambulance Man: How long have you had Sickle Cell?
Me: *Blank Stare*.....You playing, right? I was born with it, it's GENETIC!!!
Ambulance Man: Ohhhhh ok
Me: Oh Lawwwwwdddd!!!!
He gave me some oxygen and I was relieved...he stopped asking me questions
Now onto the doctor. I reach the hospital and it was a sight, it was more like a jail cell than hospital. Bars on the windows, guards everywhere; did yall bring me to the right place?
The Doc came out, asked what was going on, I told him. He told me I didn't "look" like I have Sickle Cell, so I was annoyed with that. Then he asked me about the meds I usually take, I told him morphine and dilaudid. He said he had neither, but had another narcotic that would help. I said cool, I'll take it!
#Don'tjudgeme...I was in pain
He began to give me an IV, he searched for a vein and found one. Good job so far! But before I can open my mouth he stuck the needle in and didn't even CLEAN THE SITE.........
The needle was sterile it came out of the pack...but still.
Now on to the nurse.
We see "Sicklers" (did she just call me a Sickler?) like yourself all the time, but most of them are Indian or Negroes. Do white people get Sickle Cell in the States?
When does it end?
She then tried to place me on a bed that had bloody sheets, and tried to hide it. Lady YOU ARE NUTS! I told her she had to place me somewhere else, so she took me to an open room where I was laid on a bed with clean PAPER. I was cool with that. I laid there with my fluids running thru me while the meds did their job. In 5 hours I was being discharged and my IV was being taken out at the FRONT DESK by an intern with NO GLOVES on.
I was out of there!!! Thank God I didn't have to get transfused because I would have been on the first plane back to the U.S.A.
With all this said, Trinidad needs a lot of help caring for the Sickle Cell Community there. This task will be by next initiative!
I'm signed up, how about you? Sign up for Advocacy Day in Washington D.C.!!
March 23-25 is Advocacy Day in Washington. Become an advocate for yourself and/or others and make a huge impact! Sign up using the link below!
Wednesday, January 26, 2011
Finding a Mate who understands Sickle Cell Disease
How do you begin telling someone your dating, you have Sickle Cell Disease?
When is the right time to tell them?
What do you do if they reject you and tell you they don't want to be with someone who has a "disease"?
Let me know......
When is the right time to tell them?
What do you do if they reject you and tell you they don't want to be with someone who has a "disease"?
Let me know......
Transitioning: From the "kiddie hospital" to the "big peoples" hospital!
I transitioned from Pediatric care (Children's Hospital of Philadelphia: CHOP) to Adult care (Presbyterian Hospital) at the age of 23. It was a totally new world, but it was my time. Although, my Hematologist would haver allowed me to stay until I was 25 (my current age) I was ready to go!
My wanting to be transition came from an incident that happend when I was hospitalized for a crisis at CHOP. I had been in the hospital for a week or so with Acute Chest Syndrome and a irrhythmic heartbeat.....I was pretty sick! Anyway, the fellow who was "caring" for me, was a nasty ol' thing. LOL...She ordered for me to have a MRI done at 4pm, it wasn't done until 10:30pm...during this time I had visitors who I did not get to see.
When I returned to my room, it was 11:30pm, the fellow came to my room and told me she wanted to discharge me that night. Was she CRAZY OR WHAT?! She insisted that I should have one of my visitors take me home....after they left and that was none of her business anyway; and she didn't even have the results of my MRI, nor scripts. She left and came back the next morning ready to discharge me, still with no scripts. I didn't get out until 3pm, I was so OVER the entire experience, that I was ready to leave CHOP.
Now my first crisis in adult care........
I was having chest pains and thought, "I'll just go to the ER at Presby, and I will be seen and everything will be ok"...Laaaawwwwddd, was in for a rude awakening! I arrived at the ER, told them I was having a SCD crisis, the lady at the desk told me to sign my name and have a sit..........waiting....waiting....waiting...still waiting! Three hours passed before I was brought to the back of the ER to be seen. This was far from pediatric care, where you can call before you arrive and when you get there you already have room on the Hematology Acute Care floor.
Once I was admitted to Presby, I had the best care given to me and was very pleased with my doctor and the nurses.....shoot, even the food!!!
Share your transitioning experience here!!
My wanting to be transition came from an incident that happend when I was hospitalized for a crisis at CHOP. I had been in the hospital for a week or so with Acute Chest Syndrome and a irrhythmic heartbeat.....I was pretty sick! Anyway, the fellow who was "caring" for me, was a nasty ol' thing. LOL...She ordered for me to have a MRI done at 4pm, it wasn't done until 10:30pm...during this time I had visitors who I did not get to see.
When I returned to my room, it was 11:30pm, the fellow came to my room and told me she wanted to discharge me that night. Was she CRAZY OR WHAT?! She insisted that I should have one of my visitors take me home....after they left and that was none of her business anyway; and she didn't even have the results of my MRI, nor scripts. She left and came back the next morning ready to discharge me, still with no scripts. I didn't get out until 3pm, I was so OVER the entire experience, that I was ready to leave CHOP.
Now my first crisis in adult care........
I was having chest pains and thought, "I'll just go to the ER at Presby, and I will be seen and everything will be ok"...Laaaawwwwddd, was in for a rude awakening! I arrived at the ER, told them I was having a SCD crisis, the lady at the desk told me to sign my name and have a sit..........waiting....waiting....waiting...still waiting! Three hours passed before I was brought to the back of the ER to be seen. This was far from pediatric care, where you can call before you arrive and when you get there you already have room on the Hematology Acute Care floor.
Once I was admitted to Presby, I had the best care given to me and was very pleased with my doctor and the nurses.....shoot, even the food!!!
Share your transitioning experience here!!
How to maintain a healthy weight and diet when living with Sickle Cell?
When I was younger, I was skin and bones. In fact, my nickname given to me by my uncle was Olive Oil. Having Sickle Cell caused my body no to gain weight like I should have been because of the destruction of my red blood cells and my caloric intake being low; although I ate like a horse!
As became older, I say during my second year in college, I began to put on "size" as my mother would say. My weight stayed steady throughout those years. I ate a balanced diet, things like brown rice, fish, chicken, lentils, black grapes (for antioxidants), an occasional Snickers even....all because I needed to maintain that healthy weight. Maintaining a healthy weight is important when you have SCD because if you get sick it is easier for you to "bounce back" and not have too many SCD complications.
How do you maintain a healthy weight and diet?
As became older, I say during my second year in college, I began to put on "size" as my mother would say. My weight stayed steady throughout those years. I ate a balanced diet, things like brown rice, fish, chicken, lentils, black grapes (for antioxidants), an occasional Snickers even....all because I needed to maintain that healthy weight. Maintaining a healthy weight is important when you have SCD because if you get sick it is easier for you to "bounce back" and not have too many SCD complications.
How do you maintain a healthy weight and diet?
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