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

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.

Source: Kaiser Health News

Sickle Cell in Costa Rica - Blood Has No Color

 

http://www.fundrepa.org/

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

www.fundrepa.org  

FUNDREPA facebook page

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

 

 

 

 

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!!!!!!!!

 

 

 

 

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)