₦airaland Forum

World Cancer Day originated in 2000 at the first World Summit Against Cancer, which was held in Paris. At this meeting, leaders of government agencies and cancer organizations from around the world signed the Charter of Paris Against Cancer.
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Since 1995, the President of the United States has made an official proclamation on World AIDS Day. Governments of other nations have followed suit and issued similar announcements.
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Notice the years of comencement of awareness and the people involved in the initial Global Awareness Creeation. It is very important to the topic of this thread.

sammyjay76: DEAR SCD PATIENTS,
if we are not silent and keep to ourselves then we would have solution soonest; its high time we believe in herbal remedies and let the sufferer have end to their traumas!

Kindly read the attachment very well and feel free to contact us.

SammyJay76,
I want to believe you have the best interest of SS peoplee at heart. But this thread and other threads I have created and will be creating is purely for enlightenment purposes, and not for advertising.
Whether Herbal remedies or purely English Medicines, different drugs work for different SS person (NOT PATIENTS). Thank you.

kkkp: To siphon funds

have patience, I will soon get there.

World AIDS Day , observed on 1 December every year, is dedicated to raising awareness of the AIDS pandemic caused by the spread of HIV infection. Government and health officials observe the day, often with speeches or forums on the AIDS topics.
Since 1995, the President of the United States has made an official proclamation on World AIDS Day. Governments of other nations have followed suit and issued similar announcements.

World Cancer Day annual observance held on February 4 that is intended to increase global awareness of cancer .
World Cancer Day originated in 2000 at the first World Summit Against Cancer, which was held in Paris.
At this meeting, leaders of government agencies and cancer organizations from around the world signed the Charter of Paris Against Cancer, a document containing 10 articles that outlined a cooperative global commitment to improving the quality of life of cancer patients and to the continued investment in and advancement of cancer research, prevention, and treatment. Article X of the charter formally declared February 4 as World Cancer.

Many people will be wondering what this topic is all about, and who plays politics with different health conditions. Some will even go as far as thinking the OP is high on some cheap stuff. What am blabbing about.
How many people knew that yesterday was the day set aside to celebrate The World Sickle Cell Day? I guess only very few. How come our newspapers and other media news did not carry the news (is it even a news?). My guess is that very few really know what this disease is all about, and how important it is to create awareness for it.
Yeah, many have heard about that neighbours kid who died of Sickle Cell complications, or that classmate who is always in and out of hospital ward, and it is being rumoured that s/he is a SS. Eyah, so that beautiful girl or handsome dude is SS?
Some have even gone as far as breaking up with that lovely relationship, because Daddy or Mummy wouldn't want to hear that they have anything to do with a SS. You hear something like; "Are you mad, what sort of a person gets involved with a girl or a boy whom you very well know that can drop dead any moment?"

What is the POLITICS OF DISEASE AWARENESS CREATION?
Stay tuned.

Life hasn’t been what Fred and Yvette expected when they got married 22 years ago. “I have no regrets,” Fred says proudly. And despite affirming that he would not have married his wife had he known about the possibility of passing sickle cell disease to their children, Fred says “I don’t regret marrying her. And I don’t regret having Ary.” Fred has a special relationship with all three of his daughters. Despite challenges that many parents face with their children as they grow up, Fred makes sure that they know that he’s there for them. “My daughters will always know that Daddy loves them.”

Copied from www.aphlblog.org/2012/09/happy-birthday-to-ary-10-years-of-living-with-sickle-cell/

It wasn’t until Ary was eight that she had her first crisis – several more have followed since then. The crises leave Ary in a great deal of pain. The only way to deal with them is to treat the pain with medication and wait for it to pass. In retrospect, Fred and Yvette can identify what went wrong leading to those crises. They constantly assess what changes need to be made to Ary’s diet, activity, and her own understanding of her body. “We have had several conversations with her about monitoring when her body is tired,” Fred told me. “Knowledge helps us all control this.” I asked Fred if going eight years without a crisis led them to take things for granted. “Never,” said Fred. “From the time Ary was little, she was always doing things she shouldn’t have been doing.” Fred worried about Ary constantly. He knew that he needed to be particularly concerned about head injuries with a child who has sickle cell – yet Ary was a rambunctious kid who seemed to accidentally bang her head often. “As a father you want to protect your children, but you can’t keep them from doing things.” It is hard to say what might have happened without the early diagnosis that followed the positive newborn screening. “If we hadn’t started the penicillin early, she could’ve gotten an infection. Who knows. All I can say is I’m glad she’s still with us.” Fred doesn’t like to think about what might have been if Ary hadn’t been screened, and understandably so.

They immediately began giving Ary penicillin twice a day to prevent infection. Infants with sickle cell are extremely vulnerable to infection; in fact, infection is the leading cause of death among patients. Fred and Yvette visited the hematologist at Children’s every six months. Ary responded so well to the treatment that the diagnosis improved from sickle beta zero thalassemia to beta plus. On a scale of severity, sickle cell anemia is the most severe with beta zero thalassemia being very similar. Beta plus falls at the other end of the spectrum and is a far more mild form of sickle cell disease. Ary also had her hemoglobin, the molecule in red blood cells that carries oxygen, working in her favor. Most people produce fetal hemoglobin until they are around six months old when they begin producing adult hemoglobin. Fetal hemoglobin protects the blood cells from sickling, or turning into the crescent-moon shape that causes them to get stuck in blood vessels. Ary produced fetal hemoglobin until she was six years old; her own body was protecting her from the painful symptoms that come with sickle cell disease.

They were shocked. “I was very upset. I wanted to sue someone… anyone! I was hurt. I thought about what my baby was going to go through. This wasn’t what I ever would’ve wanted for my children.” Fred actually went as far as to meet with an attorney. “He told me that if I decided to sue, the first question I would have been asked is if I would’ve married my wife had I known this could happen.” Fred was caught off guard by that question. He thought about it. “No. I wouldn’t have. I wanted kids. Always. To me, getting married meant having a family and I did not want this for my kids.” I asked Fred if Yvette would say the same thing. He laughed and said he didn’t know… so he called her. Fred presented her with the same question and she responded the same way. “No. I wouldn’t have married you if I had known our kids could have this disease.” Yvette stayed on the phone and we chatted more about Ary. I asked her how she felt when they finally confirmed that she did have sickle beta thalassemia. The phone went quiet. Yvette began to cry. Ary is 10 years old, but the memory of that day was still fresh enough to make her emotional. “I was devastated.” Fred agreed and said that devastation lasted about six months for him. “Being able to have her and physically hold her in my arms helped me through it.”

They ran lots of tests – all were positive. Fred and Yvette still weren’t convinced. As far as they were concerned, something was wrong with the tests. Eventually the pediatrician and his wife, a fellow pediatrician who had been called in to review the case, were baffled and sent Ary to see a hematologist at Children’s National Medical Center in Washington, DC. She ran more tests – all were positive. The hematologist sat down with Fred and Yvette and began to explore their family medical histories. She asked if there were any blood disorders in either family. Yvette recalled that before Ary was born she was told that she carried the trait for a beta thalassemia. “I was told it was a Mediterranean blood disorder. No one ever mentioned sickle cell,” she told me. “That’s it,” the doctor told them. “Your baby has sickle beta thalassemia, a variant of sickle cell anemia.”

Ary — 10 years of Living With Sickle Cell: The Story.
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When Fred was 16, he was told that he had the sickle cell trait, a genetic abnormality that usually does not cause any of the symptoms that come with sickle cell disease. The doctor told him he probably wouldn’t have any problems, but that if he married someone else with the trait their children could have sickle cell disease. Even at 16 years old, he took that very seriously. Years later when he began dating the woman who would become his wife, one of the first questions he asked her was if she too had the sickle cell trait. “She said she didn’t have it.” What is sickle cell disease? It is a group of inherited blood disorders that causes red blood cells to be deformed (sickle shaped — see photo below) and inflexible. The cells can get stuck and clog blood vessels as they travel through. As they get stuck, they can cause painful crises, as they are called, in patients as well as other potentially serious complications like stroke, splenic sequestration, and acute chest syndrome, a condition similar to pneumonia. In children, untreated sickle cell disease can cause delays in development and greatly increases the risk of infection (the most common cause of death among children with sickle cell). In the United States, all newborn babies undergo screening for several inherited disorders including sickle cell disease. Fred and Yvette had two children before having Ary. (His oldest two children were from a prior relationship.) On September 12, 2002 they welcomed their beautiful baby girl. Because they were experienced parents, they were familiar with newborn screening as part of the battery of tests performed on new babies. “I didn’t understand it, though. I didn’t question why it was done – I saw it as a formality at the hospital.” They took Ary home and started their life as a family of seven. A few days later the phone rang. “The person asked for the parents of Aryiana. That obviously grabbed my attention because she was a newborn!” They identified themselves as being from the Maryland Department of Health and said that Ary tested positive for sickle cell disease. “I was really rude,” Fred confessed. “I knew that both parents had to have the sickle cell trait in order for the child to have the disease, and Yvette didn’t have it.” He told the person on the phone that they were mistaken and hung up. They immediately called back. He hung up on them again. They called back. “I told them that what they were trying to tell me was medically impossible.” The woman on the phone calmly told Fred that she understood but that Ary needed further testing. Fred agreed to take Ary to their pediatrician who also happened to serve as the county’s health officer.

myGoddey: Ac highly resistant to malaria but should not be exposed to mosquitoes

I think your post is confusing. On the one hand you said AC is highly resistant to Malaria and on the other hand you are giving a warning that AC persons shouldn't be exposed to mosquitoes (an agent of malaria if I may say so).

blink182: Moderator take this to the frontpage, I can't believe I missed it. Today is already gone.

I was beginning to wonder if I were the only Warrior on this forum.
I am glad you replied to the post.
How has it been Warrior?

Raising Sickle Cell Disease Awareness
One of the best things we can do as a community is to educate the public and build awareness about sickle cell disease.

Sickle Cell Disease and Employment
Perhaps one of the most challenging aspects of sickle cell disease for adults involves holding down full-time employment. Those with sickle cell often miss work — sometimes for days or weeks — due to complications of the disease. When employers don’t understand the disease, and the impact it has on a person's everyday life, they may jump to conclusions about their employee that are simply incorrect and unfair. Darryl Watkins talks about his experience. “When I landed my first job out of college, I suffered a very severe pain crisis and became hospitalized. Once I was able, I phoned my manager to touch base with her and she fired me right on the spot — while I was lying in the hospital bed.” Upon reading this account, many people might be shocked. But for sickle cell patients, this happens far more often than you might think. Watkins explains, “I had that experience one other time. I had just gotten home from the hospital after having another excruciating pain crisis. I called my manager to let him know that I felt better and would return to work soon. He fired me on the spot. Luckily, my manager’s supervisor called me right back and offered me my job back.” These stories may seem hard to imagine, but this is real life in the professional world for many people with sickle cell disease. It’s not all bad, though. Watkins talks about his best employment experience (his current one) and how it transformed his professional life. “One of the most awesome work experiences I’ve had occurred when the Pennsylvania Sickle Cell Society came and put on a luncheon for some people in my department. They educated my co-workers about sickle cell disease, its complications, and what people with SCD deal with on a daily basis. “The entire team changed the way they approached me. It made my working environment incredibly motivating and truly helped me feel a part of the team rather than an outsider.”

Sickle Cell Disease's Legacy of Pain and Loss
Watkins lost his sister to sickle cell disease when she was just 17 years old. At the time, he was still only a child himself. Dealing with the pain of this disease and watching a loved one suffer and die from it has proven especially challenging for Watkins. “My sister suffered a lot more than I did because I didn’t really start having [pain] crises until I was about 12 years old. It was hard watching her suffer. I just wanted to take the pain for her. Losing her hurt a lot, but I think it also helped ignite my passion for building awareness about this disease and making a difference to my community despite my illness.” Watkins’ natural optimism carries a tone of hope for others suffering from sickle cell disease and dealing with the associated health issues and the negative stigma of having the inherited blood disorder.

Darryl Watkins has the HbSS variant of sickle cell disease.
An inspiring, uplifting individual, he is married with three children, all of whom carry the sickle cell trait . Watkins says that he began to understand the profound impact sickle cell disease would have on his life at the tender age of 6 or 7. He wanted to participate in peewee sports and his parents wouldn’t allow it, citing his illness and the fact that becoming overheated or dehydrated could cause serious health problems for him. “With each passing year, the discussions I had with my parents about participating in sports became increasingly intense,” says Watkins.

Stigma of Sickle Cell Disease
The stigma of sickle cell disease is strong and patients suffer because of it. Dalmavoletes observes that many health care professionals don’t understand the specifics of the disease and the special pain management needs of sickle cell patients. “My frequent everyday pain episodes have caused me to build up a tolerance to the common pain medications prescribed in a hospital setting. This means that, when I do show up at the emergency room (ER) with a pain crisis, I need a larger dose than the typical trauma patient to control my pain. You’d be surprised how many doctors just don’t understand that.” He realizes that physicians working in the ER must watch out for drug-seeking behavior and take care not to prescribe too high a dose of these powerful medications to patients. But, he says, even when he tries to explain that he has built up a tolerance due to sickle cell disease — and asks them to verify this with his physician — they usually do not listen. This results in much unnecessary suffering for him and, ostensibly, other patients in his position. It’s humiliating for Dalmavoletes and other sickle cell patients when ER doctors and other health care workers look at them as common narcotic drug seekers, especially when all it would take is a quick peek at the electronic records on file to verify their status. Dalmavoletes offers a solution Dalmavoletes suggests, “Perhaps we could carry an identification card of sorts, similar to those that diabetics or epileptics carry, that verify sickle cell disease status and include a number to call for details.” Although every hospital would carry the responsibility to decide whether or not to participate in a sickle cell disease identification card program, the idea has promise for sickle cell disease sufferers. What do you think? Get involved with Ryan Clark’s Cure League and share your ideas for solutions to this and other problems faced by those with inherited blood disorders.

Kyriako Dalmavoletes has HbS beta thalassemia. This means he received a HbS gene from one parent and a beta thalassemia gene from the other. Both Dalmavoletes and his younger sister have HbS beta thal. He knew he was different by about age 4 or 5, but it wasn’t until middle school that he truly understood the impact the disease would have on his life. “At about age 12 or 13, I realized this disease would carry a lot of weight in my life. I saw my older siblings driving and getting ready for college. I thought to myself, ‘Am I going to be able to get a license, go to college, have a job? Like everyone else?’ I just wanted to have the chance others had.” All grown up now, with an education and license to drive, Dalmavoletes works in the field of information technology. Sickle Cell Disease and Health-Based Discrimination Dalmavoletes shares some telling stories about how sickle cell disease has resulted in problems in his career. “I told my manager at one job that I had sickle cell disease and that I was experiencing a pain crisis that may keep me out for a few days. Without blinking an eye, she said that my health issues were causing an inconvenience and that she was going to have to rethink my contract. “My supervisor at another job really fit the definition of the word jerk. He was very invasive and asked all manner of personal questions about my condition. Every time I had to be out — which wasn’t really all that much — he wanted detailed specifics about what happened, where I received care, what the doctors prescribed, and more. It really made me feel uncomfortable. “Also, when concerned co-workers would inquire about how I was doing, my supervisor would take me aside and order me to stop ‘whining about my condition to my co-workers.’ I never complained to my co-workers, but they could tell when I felt bad and knew I had sickle cell.” Dalmavoletes purposely does not apply to jobs where his position would carry too much weight. It’s not that he’s not willing to do the work; it’s simply that he does not want his absences to adversely affect the performance or success of others on his team. He’s also careful not to take positions that require travel, since air travel could prove dangerous for him. But You’re White. How Can You Have Sickle Cell? Dalmavoletes’ parents are both from Greece and are both Caucasian. He tells of one incident in which a hospital nurse, seeing his Greek last name and noting his Caucasian race, felt the need to come back to his room to verify that he actually had sickle cell disease. “She said, ‘You say you have sickle cell, right? But you’re not black.’ My black friends are always taken aback when I tell them I have sickle cell disease as well.” Sickle cell disease isn’t just a “black” disease. While the majority of known sufferers have Sub-Saharan, African ancestry, it’s been noted in virtually every race and ethnicity.

The Voices of Sickle Cell Disease.
These inspiring people openly share their personal pain and unbelievable challenges arising from this devastating disease. But in the midst of their suffering and their emotional pain from enduring the stigma of sickle cell disease, there is hope and inspiration.

Culled From www.cureleague.org/patient-stories/

Below are the Stories:

I really don't want to do this, but if the MOD's wouldn't mind I will be happy to see this thread on the FP.
I am aware that I am the only one posting on this thread.
At Least it the World Sickle Cell Day celebration..... June 19.

It's World Sickle Cell Day! Please join the 100 Million Tweet Campaign.
#WSCD2013

Break The Silence.

Good Morning FB.....Today is World Sickle Cell Day!!!!! As I continue my plight to educate and advocate for Sickle disease I ask that you all take time to learn about Sickle Cell! Please remember SICKLE CELL IS A BLOOD DISORDER NOT A RACIAL DISORDER!!!! Individuals affected are ASIANS, ARABS, LATINOS, AFRICANS, ITALIANS, and the list goes on........

Just, copied this from friends FB page.

Oh well, it's another day to talk about Sickle Cell Disease and after today life will go back to normal. We will all carry on as if such things as crisis doesn't exist. Some won't even bother to open the thread cos it has nothing to do with them. None of their siblings, friends or nighbours have such a thing as sickle cell.
Some, especially the warriors, will be like why can't Abali just drop this issue.
After all these talks, what have changed?
What has he achieved?
Or, maybe he wants us to start feeling bad about this SCD of a thing?
Well, I will tell my Warrior friends one thing. No matter how much we live in denial of SCD, it has come to stay. So we better embrace it and do the best we can to live a LONG and FULFILLED life.

Maybe you think that you have known all there is to know about SCD. But exactly how much do you know?
If you get involved with a SCD person tomorrow (relattionship wise), what are going to do? Leave them because of their genetic condition? Or stick with them out of pity, because you feel it will be cruel to leave them?
What if you are in a position to advice someone involved with a SCD person, what will be your advice?

Again How Much Do You know about SCD?

If you have gone through some of the questions and answers above, but you still have some more questions to ask. I will urge you to ask, if I cannot answer it there are others who can. I may not be a Medical Practioner, but I have a passion for Sickle Cell Disease.
Don't be shy, afterall Nairaland is a faceless forum. If people can openly talk about HIV/AIDS and Cancer these days, why then will you shy away from talikng about Sickle Cell.
Are you a Parent of a Warrior?
Are you a Sibling to a Warrior?
Are you a friend to a Warrior?
Are you dating or interested to date or even engaged or married to a Warrior man/woman?
Come out of your hibernation. Come let us talk about it. Even if you are just the curious type, it doesn't matter. I want us AFRICANS and the World at large to come to terms with Sickle Cell Disease.
Believe me, SCD is not going away any time soon. Young men and women will keep making those mistakes. And Sickle Cell children will be born every now and then.
Are you waiting till it happens to you, or your sibling, or your friend or even your enemy before you start asking questions about Sickle Cell disease?

www.nairaland.com/346408/marry-sickler
www.nairaland.com/1097963/project-sickle-cell-disease-awareness

www.nairaland.com/1215138/marriage-sickle-cell-anaemia

All the threads above have one thing in common, and that is they were created by the same person and they were created for the purpose of enlightenment and public consiousness about the sickle cell disease.
SCD mainly affects people of African origin, although some caucausians do have this inherited blood disorder. I must confess that it is a very Challenging and life threatening genetic condition.
Is it a Terminal disease? The answer is NO.
Does it define the Sickle Cell person? Again it is a NO.
Does it limit the sufferer from attaining his or her goals in life? NO
Can the Sufferrer live a normal life, like every other person? YES
Is there any particular age limit that the sufferrer cannot attain? NO. Some Sickle Cell persons have lived up to their 70's and 80's.
Does Sickle Cell stop one from having children? NO. It is a blood genetic disorder and has little or nothing to do with the reproductive system.
Does SCD affect the stamina of the man during love making? LoL. I think this is one area that SCD even helps the guy. I am a living witness (if you doubt, maybe we can give it a try....with the permission of my partner)

Today 19th June is set aside to celebrate The World Sickle Cell Day. If I am right, today is the third celebration of World Sickle Cell Day. Before I go further, I will like to give a shout out to all my Warrior Brothers and Sisters out there.
HIP! HIP!! HIP!!! HURRAY............... You all know is not easy fighting this scourge called Sickle Cell. Imagine living with pain every so often and you still find the courage to go about your day normally, putting up smiles on your faces. Kudos to all Warriors out there. NEVER NEVER GIVE UP.

Emmion: @ FSB,

thanks a great deal for the information. I have been looking for someone like you to help out. There is this lady i have been seeing for a while. I love her so much and marriage ASAP is already in my plans but there is the problem of genotype. This breaks my heart so much. I have gone for genotype test 3 times. First one i was given AC. Second was AA. Wanting to be doubly (or triple sure), i went for a third test and it turned out to be AC. Now my girlfriend also is AC. For me thats a problem. My parents are both AA. My elder brother is AA. So where did i get the AC from? I am confused. I love this girl but dont want pains for her and myself later when we start having children.

Please, i desperately need immediate advice. Any other Doctor in the house pls help.

This is a 2008 thread, but I just want to let you know that at least one of you parents is AC. They both cannot be AA and you have AC.
If you have not married the lady, I will urge you to take that leap of faith and marry her. But if She is AS, then you may look elsewhere.
CC,SC and Sickle cell BetaThal are the mildest form of Sickle Cell diseases.
Goodluck.

[It doesn’t interest me what planets are squaring your moon.
I want to know if you have touched the center of your own sorrow, if you have been opened by life’s betrayals or have become shriveled and closed from fear of further pain!
I want to know if you can sit with pain, without moving to hide it or fade it, or fix it.
-Oriah Mountain Dreamer]
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Tomorrow is World Sickle Cell Day. What have you done for the Warriors around you?
Have you Helped alleviate their pain, Physical and/or emotional?
Or
Have you added to their pain, Physical and/or emotional?

Warriors Fight the several unseen battles, emotional, psychological and of course the physical. We would rather you jugde us on our own merits as fellow Human Beings, than pitying us.