Thursday, October 24, 2013

Sickle Cell Disease & Natural Healing


What do you know about natural or herbal healing?  How can we (people with sickle cell disease) help ourselves with the benefits of herbal remedies?  Mankind has used the benefits of earth's herbal remedies for centuries.
 
Why have we stopped?
 
Tamika Moseley is a mom with sickle cell trait. Her eldest child inherited sickle cell disease from both her and her husband. Rather than succumb to self-pity, self-blame or hopelessness, Tamika has chosen to be pro-active about her fight with this disease. She is fighting on the battlefield of nutrition and natural healing.


  I interviewed Tamika about her new book, Sickle Cell Natural Healing:

Q.  Give us some background about why you wrote this book. 

A.  I wrote this book because my oldest son has sickle cell disease, my youngest son and husband both has SC disease which is a milder form of the disease.  At the age of 1yrs old, my oldest was hospitalized every 3-4 months with sickle cell crisis and he also received 2 blood transfusions that same year.  I had to choose another avenue for my family because what was happening obviously wasn't working. I started researching natural herbs and started treating him, today it's been 3 years and 8 months and my son has not had a sickle cell crisis, nor any complications related to sickle cell.

Q.  What did you know about sickle cell disease prior to writing this book? 

A.  All I knew about sickle cell disease is it is a very painful disease and could be fatal.  And people with the trait like myself could never have any issues.  Which later in life I found out not to be true, people with the trait can have problems.  I almost died after my 3rd child.

Q.  What have you learned? 

A.  I have learned so much about this disease, how a person doesn't make enough red blood cells to supply oxygen throughout the body and in turns how dangerous this can be; leading to organ damage, strokes and a host of other complications as well.  that sickle cell disease can be controlled with herbs.  Herbs have been around since the beginning of time and is good for so many things, herbs can heal so many sicknesses and diseases, we first have to have an open mind to the healing power of herbs.

Q.  How can this book help others?

A.  This book can help others be aware that there are other avenues to take when dealing with sickle cell.  I wanted to tell my story because at one time; I was that person in and out of the ER on a regular basis with my son; but not anymore.   I was that person having pain crisis in both legs and both arms and near death.  I understand how hurtful, emotional, heartbreaking this is when you have a loved one suffering and there is nothing you can do about it.  I want people to know that they don't have to suffer, they don't have to be in pain, they can live healthy and happy lives with sickle cell.  Bringing awareness to people globally that herbs can minimize crisis and hospital visits.  Also minimize the number of deaths.

Q.  What is the one thing you want readers to remember? 

A.  Always remember that God grants us the serenity to accept the things we cannot change and to have the courage to change the things we can.  We have to educate ourselves and have know that knowledge is power, but only if we apply it.

Q.  What are you doing to bring awareness to sickle cell disease? 

A.  I have teamed up with  Dr Charlie Ware, a homeopathic doctor in Hollywood, FL (he treats patients with sickle cell disease with herbs) and has had great success!!!  We both are passion about this disease and our goal is to educate the world globally.  This disease has been around for 100 years and it's time for us to take back our lives.  We will be at the Jerk Festival in Sunrise, FLNovember 10th promoting awareness and I will have my book available to sale.

Q.  How can we purchase this book?

A. The book will officially be available November 4th.  Pre orders will begin 10/4/2013 through my website:http://www.ssnaturalhealing.com/ (site will be up and ready for pre orders on 10/4/2013) for International request: please email info@ssnaturalhealing.com and include your name, address, city/country/contact number and how many copies requesting and we will get back with you.

Tamika's Contact information: www.ssnaturalhealing.com 
https://www.facebook.com/nicolnaturals

 
 
 
 

 

Sunday, September 15, 2013

Sickle Cell Awareness Month - Globally

Global Sickle Cell Awareness


September is the best time of year. The weather starts to cool down as the earth moves away from the sun's summer heat. And, it is also Sickle Cell Awareness Month. Recently, I'm overwhelmed by the many activities related to this event. People are walking, talking, teaching, and even preaching about sickle cell disease this month.

         
My heart is very glad.      

However, I have been looking for something else. I've been looking for global awareness, global acknowledgement and global assistance for people with sickle cell disease. 

Guess what? I think I've found it.

There is a health care assessment "toolkit" created by PHG Foundation for countries to evaluate their health care needs, as it relates various diseases. Thankfully, they have included sickle cell disease. 

The PHG Foundation's Toolkit for Health Needs Assessment in Congenital Disorders has “country specific” data from sources like the World Health Organization (WHO). 

PHG's ultimate goal in developing the toolkit is to improve health outcomes of people with congenital disorders and reduce the burden of these disorders.

This toolkit is useful in many ways. Health administrators, health agencies, health departments, or anyone who determines healthcare policy and funding decisions, can use this tool useful in assessing current and planning future health care strategy needs.

If you are a healthcare professional, policy maker or health administrator please pass this information on to the people who make health care assessment and funding decisions in your country. 

Once they complete this assessment, they just might find justification for providing better health care for people with sickle cell disease.
 

Friday, August 23, 2013

A Mother’s Love – Selina’s Battle with Sickle Cell


Whenever I travel to a new city, I look for sickle cell disease advocates in the area. I like to make contact and invite them to events that I’m participating in. Recently, I was visiting San Diego, California and searched for local sickle cell contacts.  I found one.
During my search, I came across an article about Selina Harris.  Selina is a child in San Diego similar to other children her age with one exception, she is living with sickle cell disease. Selina is treated at Rady Children’s Hospital of San Diego, a sickle cell center.

 In this article, I discovered Selina’s courage, strength and perseverance AND the love of her mother Yolanda.
I called Yolanda to connect and find out more about Selina. I was surprised to find out the story I was looking for was Selina AND Yolanda's story. Yolanda represented to me every parent who supports and fights for their children with a medical challenge. Yolanda is a caregiver, advocate, organizer and parent with the unending love for her child & all children living with sickle cell disease.
As an everyday hero, Yolanda goes about her everyday responsibility of making sure Selina lives a life of wellness. She also organizes events to educate her community about sickle cell disease. 

 


 
1st Annual Walk for Sickle Cell Anemia 2013
 

We can always recognize an everyday hero by what they give to the world. Yolanda and Selina Harris gave me so much encouragement.  I’m encouraged by parents teaching their children to be self-advocates for their health.  I’m encouraged that parents are speaking up to medical professionals reminding them that “we”, people living with sickle cell disease, are “living” and should be treated with care, respect & dignity.  I’m encouraged that people with sickle cell disease are being pro-active and educated about their treatment options.  I'm encouraged by Selina and Yolanda.

Yolanda is not unique. There are sickle cell heroes throughout the world advocating, marching, organizing, teaching, giving, and sharing their time, talent and resources.
Today, I’m taking notice of just one set of heroes, Selina & Yolanda Harris. Good job!!!!!!  

Friday, July 26, 2013

A Hero's Sickle Cell Battle - Keone Penn

I always wanted to interview Keone Penn. In 1998, he was the 12 year old boy who was the first to receive an experimental stem cell treatment at Emory University Hospital. Keone received the first unrelated cord blood transplant which led to the first "cure" of sickle cell disease. 
                             

Earlier this year, I searched for Keone to get a statement on how he was doing 15 years later. I found Keone's twitter account, and told him I was interested in catching up with him and his life after stem cell surgery. I got no response. I was disappointed, but not surprised. I've found that many people who've received stem cell treatments don't (or can't) talk about their experience (bad or good) for whatever reason.
   
Personally, I still wondered what happened to that brave kid. He paved the way for many others to have hope of a cure for sickle cell through stem cell bone marrow transplants and he was my hero.

Today, I got an email notifying the world of Keone Penn's passing. My heart sank with the news of the loss of this 27 year old young man. I was saddened for his family, who I could only imagine lived a life of sacrifice on a difficult road paved by their son.

God bless the memory of Keone Penn, friend in my head and my hero.    


Time Magazine Article - The Sickle Cell Kid

CNN Article - Boy Receives First Cord Blood Transplant For Sickle Cell

Obituary - Keone Penn, 27 Medical Trailblazer 


Friday, June 14, 2013

World Sickle Cell Awareness Day - June 19

  
Bringing sickle cell disease awareness and support to the world.    


  Writer's are telling their story   

Children are living longer

Supporter's  are walking

    Advocate's are educating

   Parent's are helping globally
 
Athlete's are speaking up  
  
Warrior's are really fighting 


The United Nations considered “recognition of sickle-cell anaemia as a public health problem” and in 2008 passed a Resolution urging Member States and United Nations organizations to "raise awareness of sickle-cell anaemia."

At the time, they called sickle cell "...among the world’s foremost, and at times most lethal, genetic diseases -- at national and international levels." 

So, by Resolution, they distinguished 19 June of each year as World Sickle Cell Awareness Day to encourage relevant parties to strengthen health systems and primary health-care delivery.

Fast-forward to 2013, and there's a global effort to bring sickle cell awareness, better treatment, better care, stigma removed and a cure to all people who suffer with this disease.


Offer your comments on Facebook World Sickle Cell Awareness page.


What are you doing?

World Sickle Cell Awareness



Thursday, June 6, 2013

Guest Blog - Sickle Cell Disease and Social Security Disability

 
From P. Allen Jones: I know the inability to work because of sickle cell disease is nothing to take lightly. One thing we often experience is excessive absences, inability to perform duties and termination due to sickness. In the US, the Social Security Administration (SSA) will give disability benefits to qualified individuals. The problem for many people, it's difficult to navigate this Agency and their requirements. Thanks to Ram Meyyappan, the following guest-blog post hopes to offer helpful information. 
Applying for Social Security Disability with Sickle Cell Disease
Article by Ram Meyyappan
Social Security Disability Help
The Social Security Administration (SSA) counts Sickle Cell Anemia among the potentially disabling conditions that can qualify a person to receive Social Security Disability (SSD) benefits. If you suffer from Sickle Cell disease and are now unable to work as you once were, you may be able to receive disability benefits through either, or both, of the SSA’s disability programs.
SSD Programs

The SSA has two disability programs:

  • Social Security Disability Insurance (SSDI), which is a program for disabled workers who have built up work credits over the course of their employment and who earn below the threshold for what the SSA considers “substantial” income per month due to a severe and medically provable disability.
 
  • Supplemental Security Income (SSI), which is a need-based program designed to pay disability benefits to those who either do not meet the criteria for receiving SSDI, or who have such limited income and resources that they need additional monthly financial support.
You can learn more about SSDI and SSI here: www.ssa.gov/pgm/disability.htm

Medical Requirements for Receiving SSD
In addition to meeting the basic technical eligibility criterion for receiving SSD benefits under either of the SSA’s disability programs, you must also show that your Sickle Cell disease is severely debilitating.  There are basic medical eligibility requirements as well as condition-specific medical records and evidence necessary for SSD approval.
The requirements for every disability that qualifies for benefits include having a condition that:

  • Prevents you from earning a “gainful living”,

AND

  • Has been present, or is expected to last, at least 12 months, or which is terminal.

The condition-specific requirements for being approved for SSD with Sickle Cell disease can be found in Section 7.05 of the SSA’s Blue Book, the manual of medical conditions used by disability determinations examiners.
This listing requires you experience the at least one following and have substantial medical evidence to back up your symptom claims:

  • Three or more episodes of thrombotic (painful) crises in the five months prior to the review of your disability claim,
  • Three or more extended hospital stays in the year prior to the review of your disability claim,
  • Severe and chronic anemia with a hematocrit of 26 percent or lower

Sickle Cell Complications and SSD Benefits
If you experience severe medical complications, affecting other body systems, then you can potentially be approved for disability benefits under the Blue Book listings for other conditions, even if your Sickle Cell disease doesn’t meet the listing in Section 7.05. Here are a few of the other areas of the Blue Book under which your claim for disability benefits could be evaluated by the SSA:

  • Congestive Heart Failure – Section 4.02
  • Kidney Failure –Section 6.00
  • Stroke – Section 11.04
  • Impaired Vision –Sections 2.02, 2.03, and 2.04
  • Musculoskeletal System – Section 1.0
Concurrent Conditions and SSD

It is also important to note that the SSA does take all of your medical conditions into account when determining if you meet the eligibility requirements for disability benefits. In other words, your application for benefits should include medical records that detail all of the affects of your Sickle Cell Disease in order to support your claim for benefits. This includes the primary and secondary effects (complications) of your Sickle Cell disorder.
Getting Started with Your Disability Application

Beginning your application as soon as possible is important, as the review process can take a number of months. You can begin your application online immediately, at the SSA’s website www.ssa.gov/pgm/disability.htm or you can schedule an appointment to complete your application in person at your local SSA office.
Work with your doctor to complete the necessary medical evaluation. You will need to provide extensive information on your medical condition, how it affects your ability to work and your (limited) daily activities in your personal life, as well as details regarding your work history, earnings, and your education and training. You will also need to submit details regarding your income and other financial resources.

For more information on sickle cell disease and SSD, please visit:
 www.disability-benefits-help.org  NOTE: This is not a government help website.

Neither this site www.disability-benefits-help.org nor any lawyer or advocate associated with it is affiliated in any way with or endorsed by the Social Security Administration. By requesting a free evaluation, the user will be provided with the name of an independent lawyer or advocate who will contact the user to do the evaluation. Social Security Disability Help is not a lawyer or law firm. It is an advertising service paid for by the lawyers and advocates whose names are provided in response to user requests and it is not an attorney referral service.
 

Monday, May 20, 2013

Sickle Cell Pain And Opioids


There is no way around pain. It will not be ignored and it must be addressed. The issue doctor's deal with is how to treat it. One way is through the use of Opioids.

Sickle cell pain is chronic and life-long. Unless you have the coveted bone marrow transplant, with 100% marrow match and you've been confirmed "cured," you're gonna have episodes of pain. People with sickle cell disease are prescribed many drugs to help us deal with pain, and we have to be careful not to over take our medication....to cure our suffering.

In my previous post, I talk about misconceptions people with sickle cell deal with. One misconception is we're seeking drugs...for fun. This is a huge problem for most people in pain. In addition to misconceptions, there are issues like addiction, depression, damage to organs, and death.

We need Opioids for the relief of pain, however, they are not to be taken lightly. When taking medicine for chronic pain, we (the user) must be informed. Specially related to Opioids, we should know what are they, what they're doing to our bodies, and the risks associated (including abuse and overdose).

To learn more check out this video "Opioids: Friend or Foe" by Canadian Institute for the Relief of Pain and Disability (CIRPD).  It was intended for healthcare providers, but I also think patients (Opioid users) could benefit from this information. Also, CIRPD's article "Opioids and Chronic Pain."
Take the time and learn about Opioids. These medications are intended to help us, but they can also hurt us if we (the user) do not understand their usefulness and our responsibility. 

Check out CIRPD videos or visit their website www.cirpd.org
Also, news related to sickle cell disease and opioid effects go to Medical News Today




Monday, May 6, 2013

Fighting ER Misconceptions About Sickle Cell


Based on an article by Beryl Lieff Benderly

An all too familiar emergency room experience for people with sickle cell disease is humiliating, scary and painful.
Just imagine you are wheeled into the emergency room, every limb on your body feels like large butcher knives are stabbing into your bones. You barely speak except to nod to acknowledge your name and medical record number. A nurse fills out every form, then sends you over to a corner to not disturb others with your cries. You feel like you are dying. Your body hurts, your mind wants to give up and your soul is ready to get out of this pain filled life. This is how it is for many people with sickle cell disease during an emergency room visit.
Last year, Paula Tanabe, an associate professor at the Duke University School of Nursing was commissioned by The National Heart Lung, Blood Institute (NHLBI) to explore this problem.

This issue is complex.

People with sickle cell experience acute and unpredictable pain, severe enough to require large doses of narcotics, is a well-documented feature of sickle cell disease. But Tanabe has found that too often patients in sickle cell agony are not handled properly by doctors and nurses in the emergency department because they erroneously think the patients may be running scams, seeking drugs.

She believes stereotyping is the number one barrier behind that wait: "After being cute little kids with sickle cell that everybody felt bad for when they had pain, now they become this African American 20-year-old asking for high doses of opioid narcotics." 

Ms. Tanabe says better training of health providers and changes in emergency room procedures can improve the care that sickle cell patients receive.

There is hope and help is coming.

Currently, a team has been assembled to update the NHLBI Guideline of Treatment of Sickle Cell Disease. The guideline will be principally aimed at primary care practitioners and their patients to help manage the ongoing processes of the disease. The guideline will also be valuable to hematology specialists and their patients.

There will also be a webinar to discuss these updated guidelines in September 2013 through The Sickle Cell Information Center website.

Personally, I have experienced bad emergency room treatment as well. And, I'd like to thank NHLBI and Ms. Tanabe for their efforts to identify and address this issue.  I appreciate your help in this area.

Wednesday, April 3, 2013

Sickle Cell in Costa Rica - Blood Has No Color

 


Translate website from Spanish to English at www.Bing.com/translator

The Foundation for Research and Support for People with Sickle Cell Disease (FUNDREPA) arose from Marianella Orozco’s life experiences. The founder decided to champion the cause of this Costa Rican group because of its need to ensure sickle-cell patients receive multi and interdisciplinary care (medical, genetic, psychological, family and socio-economic) that require and deserve. With this in view, the mission is to significantly improve their quality of life; as well as arrange programs of information and disclosure with preventive and sickle cell disease awareness at the national level.

It’s vision is to represent, mediate, fight, organize, orient and unify, both nationally and internationally, for  people with sickle cell disease and their families to have a more dignified, just and hopeful view of life.

To that I say, “Amen!”

As a result of a proposed inter-agency task force by FUNDREPA in October 2006, a Committee was composed in February 2007 of integrated representatives of five entities with the purpose of developing a joint and systematic work on sickle-cell disease in Costa Rica.

The representatives of this committee include:

1.       TheNational Programme of Neonatal Screening - This is a specialized laboratory for the diagnosis of diseases located in the Center for the Prevention of Disabilities (CPD) in the national children's hospital. (Bingtranslator from Spanish – English)

2.      Center for Research in Hematology and RelatedDisorders (CIHATA) at the University of Costa Rica who say 3% of the population are carriers of hemoglobin “C”(HbC) gene and 8-10% are sickle HbS gene carriers. (Bingtranslator from Spanish – English)
 
3.      TheCosta Rican Association of Haematology (ACH) which brings together professionals in medicine and microbiology who are specialists in hematology and Hematological Immunology and transfusion medicine.  They integrate professionals from other general areas or other specialties in the health field who have an active interest in hematology. (Bing translator from Spanish -English)

FUNDREPA educates Costa Ricans on topics related to Hemoglobinopathies (blood disorders), pain management, Iron Overload, the disabling implications of sickle cell disease, and emphasis on knowing and exercising their rights.

They say, “As human beings in the first instance, and as citizens of a nation, in second, our lives are protected by a vast legal framework both at international and local levels. If we are aware… we will fight for our rights in situations in which the same are to us deny. This is particularly important when it comes to vital as health, education and work areas.”

 I agree 100%.

I always say that sickle cell disease is a blood disorder that affects people world-wide. FUNDREPA also has a comprehensive list of sickle cell organizations world-wide on their website LINKs section.

FUNDREPA is a voice for people with sickle cell disease in Costa Rica. To that I say, “Thank you and keep up the good (much needed) work!”

To find out more about check out FUNDREPA

FUNDREPA facebook page

(NOTE: Microsoft Bing translates website to your language www.bing.com/translator
 
 
 
 

Tuesday, March 12, 2013

Services For People With Sickle Cell

One thing I'm always looking for are services for people suffering with Sickle Cell Disease. There is one organization that has come to my attention and I want to highlight what they're doing. I offer my support and cheer them on as they do their very important work, supporting the needs of people with Sickle Cell Disease.

Ok, just imagine being sick, having no where to live and needing someone to care.

The Sickle Cell Foundation of Tennessee is showing how to care AND doing something about the situation. They are in the process of preparing a transition home for 6 adult males living with Sickle Cell Disease.

The Carpenter House, named after Mr. Kenneth Carpenter who co-founded the Sickle Cell Walk in the Tennessee area and who donated the property, is being renovated in preparation for ribbon cutting ceremonies soon.

The Carpenter House will give young men with Sickle Cell Disease a place to call home. This will be a place where they will receive compassion and support to stay healthy, and live in a nice home.

In addition to The Carpenter House, Sickle Cell Foundation of Tennessee provides services like providing gas cards (for doctor appointment travel), utility bill assistance (when we get sick our bills suffer too) and burial assistance (do I need to explain this one?).

Donations to help this effort would be greatly appreciated. See how you can help or get more information about what's going on at Sickle Cell Foundation of Tennessee . 
 
God bless you Sickle Cell Foundation of Tennessee for caring and being help for people with Sickle Cell Disease in the Tennessee area. Now, let's work on a transition home for women with sickle cell disease!!!!!!!!
 
 
 
 

Monday, February 11, 2013

Sickle Cell & Newborn Testing


To celebrate 50 years of newborn screening in the US, I thought I’d highlight this important health care early diagnosis tool.
In the United States and abroad babies that are born in a hospital are screened before they leave the hospital. For those that were not screened before leaving the hospital, they can be checked at a hospital or clinic within a few days of birth. Only a few drops of blood are needed from the baby’s heel.

Sickle cell disease is one of many conditions that are diagnosed with these few drops of blood.

This is critical for early diagnosis of a baby with sickle cell disease because they are at risk for harmful infections. It is helpful to know about this condition as soon as possible.
Once diagnosed, these babies can be given a daily dose of penicillin, an antibiotic medicine, to help prevent infections. Although the penicillin will not change the fact that the baby has sickle cell disease, it can help prevent serious complication problems.
In a recent article Dr. Kwaku Ohene-Frempong, Director Emeritus of the Comprehensive Sickle Cell Center at Children’s Hospital of Philadelphia, President of the Sickle Cell Foundation of Ghana, and a NICHQ faculty member talked about The importance of sickle cell screening and disparities between the US and abroad. (December 18, 2012 article by NationalInitiative for Children's Healthcare Quality)

“Why is screening for sickle cell disease important and what is the current state of screening?

In the United States, SCD testing is now largely part of existing newborn screening programs, so babies who have SCD are referred to appropriate medical resources. Previously, the first three years of life used to have the highest mortality in SCD. Now in the United States, we don’t see many deaths in the first three years, which is a real triumph for newborn screening and the care that follows. However, there is still a lot of work to be done in parent education and carrier screening, both in the United States and abroad. It is especially important in African countries where SCD occurs far more frequently but medical care is far less available.”
 
“Why is it important to follow-up with babies who are carriers of one of the sickle cell genes if they don’t need treatment?

When a baby tests positive for being a carrier of SCD, the baby may not need any medical care but the parents could have another child who inherits SCD. If both parents are carriers of the sickle cell gene or one carries that gene and the other carries a related abnormal gene, they can have a baby with a type of SCD. You need to let the parents know so they can be tested and counseled on the risk of having subsequent babies who may have SCD.”

“Africa has the most number of SCD cases of any region. What are some of the main differences you see in care and screening there?

It’s a completely different public health problem in Africa. The World Health Organization estimated that in West Africa, SCD contributes somewhere between 9 to 16 percent of deaths for children under the age of five. It’s a major public health problem, but currently no country in Africa has nationwide newborn screening. The exception is Ghana, which has recently begun to expand a pilot newborn screening project into a national program within the public health service. There are small pilot screening projects in some countries such as Benin, Senegal, Mali, Angola, Tanzania and others.“

Thank you Dr. Ohene-Frempong for what you do at NICHQ. The work your doing in Ghana is much appreciated, too.  There is a need to universally (and internationally)  test newborns for no other reason than to get them needed care as soon as possible. Let’s get our babies tested and support their long life of good health.
References:
Save Our Babies.org

National Initiative for Children’s Healthcare Quality  (NICHQ)

Center forDisease Control (CDC) Newborn Screening 

National Institute of Health Newborn Screening – Genetics Home Reference

Working to Improve Sickle Cell Health Care - (WISCH)



 

 

 

Saturday, January 26, 2013

Sickle Cell Disease In Ireland


In 2001, the National Children's Hospital in Tallaght, Ireland published a abstract review of sickle cell disease in the Irish Journal of Medical Science. After reviewing patients with haemoglobinopathy (genetic defect of the blood's haemoglogin) their conclusion was: "The increasing number of children presenting with SCD as a result of the increasing refugee numbers requires a comprehensive care approach similar to that required for paediatric haemophilia to ensure optimum care."

That was in 2001. It is now 2013 and the world is a much smaller place with migration & immigration not uncommon in many countries.

In 2009, Irish Medical Times wrote an article"Explosion of sickle cell disease could mean early deaths," they wrote, "There are currently more than 400 children with SCD in Ireland (up from 12 in 2000)."

This was in 2009. If we do the math, in Ireland from 2000-2009 there was a 3,333.00% increase in the number of children diagnosed with sickle cell disease.

In the same Irish Medical Times article, Dr. McMahon, haematologist at Our Lady’s Children’s Hospital in Crumlin, said "There is no service for adults with SCD and neither is there structured funding for children with the disease. “If we don’t get our act together, we’ll have adults dying at age 40 or 45.”

The article further states, "A vulnerable population cannot make noise, and parents of children with SCD have been scared of being deported."

WHAT!!!!!!

To add insult to injury, in 2011 The Irish Times wrote an article, "Stigma is a 'curse' on sickle cell disease." ******Stigma is defined as a badge of shame.***** So, now we have pain, suffering AND stigma for children and adults living with sickle cell disease in Ireland. 

It's now 2013, somebody please tell me that Ireland has turned things around and are now addressing the issues that Dr. McMahon described.

She said, “With treatment, patients can go on to lead happy, fruitful lives. Without treatment, it can be a drain on the State until these people die at age 60. This doesn’t need to happen.”

I HEAR YOU Dr. McMahon and people living with sickle cell disease in Ireland. I wonder if the medical community & political leadership in Ireland are hearing you too??????

Check out Ireland Sickle Cell Fund forming in Ireland. Launch Day May 2013.

Sources:
Irish Journal of Medical Science (article archived by US National Institute of Health)
Irish Medical Times
The Irish Times

Monday, January 7, 2013

Sickle Cell Disease - 5% of World Population

Often times people with sickle cell disease are alone in their pain. They usually don't know another person in their community, school or family that has it. As a result, we feel alone in our battle with sickle cell.

I'm here to tell you (and me) that there are people all over the world suffering with sickle cell disease. And thankfully, we are finally joining to advocate, educate and support each other.

The World Health Organization (WHO) says "Approximately 5% of the world’s population carries trait genes for haemoglobin disorders, mainly, sickle-cell disease and thalassaemia."

According to the U.S. Census Bureau, as of January 7, 2013 the world population is 7,058,157,073. That is just the number of people who were "officially counted".

If we do the math, that means about 352,907,854 "officially counted" people have a haemoglobin disorder. If we add numbers of people from places like India, where all cases of sickle cell disease are NOT officially counted, that original number would be far greater.

We are not alone in our battle. Stats on Sickle Cell Disease Internationally.

Statistics are good, we should know how many people are suffering. However, we need more to be done besides counting us. Some organizations like the World Health Organization (WHO) report data and define strategies for prevention and control of diseases (like sickle-cell disease).

In response to a  resolution on sickle-cell disease from the 59th World Health Assembly in May 2006, specifically, WHO resolved to:
  • increase awareness of the international community of the global burden of these disorders;
  • promote equitable access to health services;
  • provide technical support to countries for the prevention and management of these disorders; and
  • promote and support research to improve quality of life for those affected.

World Health Organization (WHO) on Sickle Cell

What I'd like to see is WHOs (2013) progress on how well they're doing with those resolutions.......AND, if international health partners have joined to do their part for their countries.

As usual, in 2013 I'm going do my part. I'm going to seek, ask, and speak in behalf of people with sickle cell disease. Same purpose, same mission.

Read more: World Health Organization (WHO) on Noncommunicable or chronic diseases