The Martin Center "Join The Chain-Stop The Pain"

Excerpt from keynote address at The Martin Center's "Join The Chain-Stop The Pain" conference in Indianapolis, Indiana.

****** Sickle Cell Awareness ******* One Reader At A Time

I have two important blogs to write.

(1) Is there a cure or NOT? part 2.

(2) The Hina Patel Foundation's work in America and India.

First, I thought I'd add a video about the recent sickle cell awareness & book signing event at Russo's Books in Bakersfield, CA. March 24, 2012

NHLBI New Sickle Cell Awareness Efforts

Check out this link to the NHLBI new information center:
Sickle Cell Information Center

Also,

See National Institute of Health (NHLBI) Guidelines for Health Professionals on the Management of Sickle Cell Disease, (dated 2004) Planned for update in January 2012.

reference: Information for Health Professionals

Your Chance To Speak

Information From: The American Pain Foundation

The Committee on Advancing Pain Research, Care, and Education is calling on the pain community to help committee members better understand what it is like to live with pain.

This is a critical time to share your story, whether you are an individual with pain, family member, caregiver or health care provider.

With the passage of the Pain Care Policy Act in 2010, Congress has commissioned the Institute of Medicine (IOM) to convene a committee to review pain research, care and education and explore ways to improve pain treatment in the United States.

Now is the time to tell your story and make your voice heard! Act now and share your individual experiences with pain and how it affects your life, including:

Barriers that have prevented you from receiving effective pain care,
Stigmas you have endured as someone struggling with pain, and
Experiences (positive and negative) you have had when seeking treatment

Go to link and tell your story. Help everyone by telling anyone!!!

Public Comment Form

One More Voice

Not Dead Yet!

Everytime I'd call my mother and ask how she was doing she'd say, "I'm not dead yet!" Her response used to hurt my feelings because I was really concerned about her wellbeing.

Well, I have been out of touch for a while. My personal life was on a one-way ticket to no where. But after the dust has settled, I must say as mama did, I'm not dead yet!

I say this with a smile, a wink and hope that my path will level off and have smooth sailing.

I will continue to be an advocate for health, an example of living beyond pain and one of many voices for people living with Sickle Cell Disease (yes, in all caps!).

Avoiding Caregiver Burnout

A recent article in the American Pain Foundation’s newsletter was entitled “Avoiding Caregiver Burnout”. This title reminded me of my caregivers. They were first my mother, now my husband and soon to be my children.

I thought about these people, who did not ask for the job, and what they must be feeling while I’m in the hospital getting blood and morphine pumped into my veins. They sit in hospital rooms, doctor’s offices and watch while I suffer. Their lives are affected by Sickle Cell Disease as much as mine is.

Before reading the Pain Foundation’s article, I personally imagined that caregiver burnout must surely be a reality for some people dealing with sick family and friends. Working full-time just adds more stress to this situation.

Here’s what the Pain Foundation suggests to reduce caregiver burnout:

1. Stay positive. Your metal health is just as important as the person who is being cared for.
2. Balance your life by taking breaks to do hobbies or things you love.
3. Protect your health. (Put your mask on first, then help others) Get rest, eat well, and take vitamins.
4. Seek out help. There are support groups and resources for information. Know what you can do and acknowledge what you can’t. (ask for help)
5. Keep communication open and be patient. Pain affects people differently; they need your patience and kindness.
6. If people offer help, have a list ready of what needs to be done. (Grocery shopping, help cooking, cleaning the house, or raking the yard.)
   

There is no shame in asking for help from family members, church members or neighbors. People who see you care for a sick loved one will jump in to help….don’t be afraid to ask

Resources:

http://www.familycaregiver.org/

http://www.painfoundation.org/

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Finally, Someone Heard Me

I've been screaming from rooftops that SCD affects all people, not just those of African ancestry. Thank God the Sickle Cell Disease Association of America finally heard.




The SCDAA 2009 poster child
http://www.sicklecelldisease.org/
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Let Nothing Disturb You

I wrote this in response to losing my eyesight for two weeks.

When your body fails you fear will steps in. During this time you may ask yourself, “How will I make it?”, or “Who will help me?” and “Why do I have to suffer?” After this, pity comes, and then depression. You might then ask yourself, “Is life only about suffering?”

To all of these questions there is no correct answer. Suffering is a reality of life that brings out the best and the worse of us all. We become stronger from the pain or we break from the pressure. Both a blessing and a curse, suffering sheds light on our strengths and expose our weaknesses.

In all of this, I am a witness to both suffering and joy, both fear and fearlessness. Life, in one way or another is not fair and full of pain. It is scary and we don’t know the ending to our individual stories. Added to this, fear of the unknown waits to disturb our hearts. It limits our lives from enjoying what we do have. What I have concluded is that life is hard, get a helmet! And, that fear is useless.

Past all of my suffering is surrender. In that place of surrender, where I choose to live, I smile and thank God for each new day. In that place, beyond sickle cell disease and all of its limitations, I find peace and rest. This is where I can still sing, dance and enjoy the goodness of God’s blessings. I rest in God, wipe my tears and recover from my sufferings.

Finally, I have to agree with Saint Theresa who wrote, “Let nothing disturb you, let nothing frighten you. All things pass away, but God never changes. Patience obtains all things and he who has God finds he lacks nothing. God alone suffices.”
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Sickle Cell "Crisis" Triggers

There are things in the lives of people with sickle cell disease that trigger a sickle cell “crisis”. Some things like simply living, working and surviving can causes triggers to push us over the edge into the pit of pain. Other things, in some cases, are preventable like lifestyle choices. Either way, once the trigger is set, a sickle cell crisis begins with full fury.

Some of the triggers are:
1. Excessive temperatures (too hot/too cold)
2. Infection (cold/flu/etc.)
3. Stress
4. Exhaustion (not enough rest)
5. Over-exertion (too much work/too much exercise).
6. De-hydration (not enough water)
7. Bad Nutrition (dieting/not eating good food)
8. Bad Lifestyle Habits (alcohol/smoking/drugs)

Once the crisis has begun, usually a hospital stay follows. God forbid a crisis leads to death, but usually a blood transfusion, oxygen, antibiotics, pain medication, and glucose (for hydration) are needed. After a week, maybe two, in the hospital you come out feeling thinner, slower, and hoping to never go back again. Wishful thinking.

Since we’re living in a stressful world full of every kind of trigger, it is important for people with Sickle Cell to really take care of themselves. What we can’t control, we should let go of. What we can control, we should. Good living and good habits will help us live.

Ps. I want to live as long as possible…so, I’m taking a nap right now! ;-)

Go Tell That

I surveyed a group of people who suffer with Sickle Cell Disease. The list of major issues they face with management of their disease AND with their interactions with healthcare providers are listed below:

1. Don’t like the side effects of medications (i.e. MS Contin, Vicodin).
2. Lack of compassion from healthcare providers.
3. Doctor’s who reduce pain medication prescriptions, not believing their pain levels.
4. Hospitals have a rule “3 doses of pain medicine, then discharge.” Not fair!
5. Health care professionals have nonchalant attitude regarding pain (no compassion).
6. When experiencing pain they are under medicated.
7. Teaching healthcare clinics seem to treat patients better, more informed about pain.
8. Discrimination by white doctors regarding SCD disease…demeaning treatment.
9. As tolerance to pain medicine increases, healthcare professionals debate increasing dose or quantity.
10. When experiencing a sickle cell “crisis”, they are under-treated. Pushed out of hospital before fully well.

I'm appalled just reading this list. I've experienced each and every one of these issues, but it makes me mad to see that others have too.

People who are sick, are sick...believe them. Most people who suffer with sickle cell disease only want help. They're not "happy" about being in pain just to get drugs. Believe that too!
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Sickle Cell Community

People Living With Sickle Cell

Are you living with Sickle Cell Disease? Go to the on-line community to meet other people with this disease. We support each other and share information.

http://sikcell.ning.com/

Ability Magazine - Dancing with Sickle Cell

Ability Magazine April/May 2009 issue features my article, "Dancing with Sickle Cell Anemia."

Order a copy of the magazine at http://www.abilitymagazine.com/. You can order a PDF (electronic) copy of the issue for $2.95 or you can have it mailed to you for $6.95. Kristi Yamaguchi is on the cover of the April/May 2009 issue.

This article confirms my mission. I have determined to cry out to the world about living with Sickle Cell Disease. Also, for the sake of patients all over the world, I want to bring more attention to the suffering associated with this disease.

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Education and information with Our Voice.

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Thalassemia and Sickle Cell Disease

Picture this, you have Sickle Cell Disease (a disease of the red blood cell) and you marry a man who is diagnosed (at age 44) with Beta Thalassemia (also a disease of the red blood cell). Now you think to yourself; why didn’t this man know he had a blood disease?

Often people who have Thalassemia don’t know they have it. Sometimes they’re told, “You’re anemic,” and that’s all they’re told.

Thalassemia is similar to Sickle Cell Disease. It is also a genetic defect of the hemoglobin within the red blood cell. Thalassemia, however, is the defect in the number of hemoglobin made in the blood, where Sickle Cell is a defect of the hemoglobin (sickle shape). Either or both of these conditions cause anemia. Some people may have both of these conditions at the same time.

This is where my utter shock comes in. My husband was told by his parents that he was anemic, but at 44 he was officially diagnosed with Beta Thalassemia. My husband is African American and the doctor who diagnosed him is Chinese. The doctor informed him that they have “the same type of Thalassemia.”

Are you getting this? A Chinese doctor and an African American man have the same blood disorder.

There are two issues that come to mind when I remember this story. Firstly, this is another example of my main argument that blood disorders are diseases of humans, not of one race or another. And, secondly, I see the need for better testing/education practices. People should know what their health limitations are, and in result, understand the impact on them having children.

People living with Thalassemia suffer just like people living with Sickle Cell Disease. Just imagine a child of ours having Beta Thalassemia AND Sickle Cell Disease. Luckily, we do not have any children, and thank God I didn’t have to find out what that would be like.

Get informed.
Get tested.

Learn more about Thalassemia at:
http://www.nhlbi.nih.gov/health/dci/Diseases/Thalassemia/Thalassemia_WhatIs.html
http://www.nlm.nih.gov/medlineplus/thalassemia.html
http://sickle.bwh.harvard.edu/menu_thal.html
http://www.cooleysanemia.org/updates/pdf/Beta_Thalassemia.pdf

Patient Centered Care

I was recently sent an email where I was asked my opinion regarding sickle cell management in the US and abroad, as it relates to improving care for sickle cell disease. The question was posed by suggesting more of a cultural/social model of care rather than a medical one.

I am just a patient with Sickle Cell Disease, and an advocate for people living with the disease. I am not a medical professional, I am not an expert, nor do I profess to know what a “medical model” is verses a “cultural/social” one. All I know is my experience with having Sickle Cell Disease.

As a child, I received treatment by medical professionals within my “cultural” community and the care I received was gentle, compassionate and well trained. It was not until I grew up, began to travel and moved to different communities. More than once I’ve been told by uninformed medical professionals, “What do you have? Sickle What?”

I was disgusted when doctors would tell me, “Oh, you have Sickle Cell, only black people get that disease.” Or, doctors would say, “Oh, we don’t get many black patients here, so we don’t see cases of Sickle Cell.” This calls for more training of medical professionals.

Just for the record, my niece looks white. She is ¾ Anglo & ¼ African American. Because we have a family history of Sickle Cell, she asked her doctor to perform an electrophoresis test to see if she was a carrier for Sickle Cell Disease. He told her, “You’re white, you don’t have that disease.” She insisted, because of her family history (her mother has it). Low and behold, was tested and found to have the Sickle Cell trait. So much for “you’re white, you don’t have THAT disease.” Again, this calls for more training of care providers.

For this very reason, I believe Sickle Cell care should be approached in a patient centered model; (as a disease of humans), not as cultural model (a disease of one racial group). Sickle Cell Disease is creeping silently into all populations, all races (because of mixing) and all cultures. Now, that’s my opinion.

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Sickle Cell Sabbath

There is a lot of money to be made by non-profit organizations that support specific “diseases.” Patients, with those diseases, may or may not benefit from those organizations unless they seek them out. One thing that every patient with Sickle Cell disease can benefit from is the donation of blood.

I recently read an article about a young girl with Sickle Cell disease who has received over 400 blood transfusions in her short lifetime. She is now working with community churches to encourage donations as part of “Sickle Cell Sabbath.” This effort was directed to community churches because they are a symbol of goodwill and a pillar God’s love. Together with a local blood center, this young girl has begun a quest to ask churches for donations of blood, rather than money. A donation that we all know will be put to good use.

We can all learn a lesson from this young girl, who has moved past her personal struggle to enhance the lives of others. We can find creative ways to help people and meet their needs, as we care for our own. We can give money, if possible, and we can give love, always. We can also encourage the world to give blood and make a donation to someone’s life. xoxoxox

http://www.redcross.org/

http://www.kentucky.com/139/story/712761.html

Young People “Don’t Give Up”

I’ve heard too many stories about young people (ages 13-30) with Sickle Cell Disease who just give up on life. They believe they've gotten a bad deal from God, that life is unfair, and it's not worth living if it includes suffering.

In result, these young people drink alcohol, smoke cigarettes (and whatever else); and push their bodies beyond its limits. Trying to keep up with their friends, these young people end up in the hospital every time.

I know it’s hard to take care of yourself when you’re suffering and sad. I know that life seems unfair when you’re the only one with Sickle Cell Disease that you know. I know you want to live, like everyone else, and I also know how it feels to be 20 years old (with life ahead of you), and Sickle Cell dims your hopes for a future.

I have to tell you young people “Don’t give up!”

There is hope past the pain. There is life beyond blood transfusions. You’ve gotta just live. Live well and take care of yourself. I promise you there are happy days ahead….live to see them. There is wellness ahead….do your part to have it. There is a future for you....to do all the things you want (or can) do. Live to see it.

I tell you this (young people), from one SC sufferer to another, cry if you want to cry…then wipe your tears. Get up, dust yourself off and get on with your life. Go ahead and dream big dreams, and then do whatever you can to make those dreams come true. God will do the rest.

When you get weak and you fall, get up, dust yourself off and try again, and again, and again, and again, and again. Then, just smile, because you're not going to be defeated by anything…. not even Sickle Cell Disease.

Calling All People With SC Disease

Calling all people with Sickle Cell Disease to participate in a research study.

The study is sponsored by Ms. Phyllis Bazen, MSN, FNP-C, a Doctoral Candidate at the University of Rochester School of Nursing. Ms Bazen is the Study Coordinator.

The purpose of the study is to explore the most common stressors that adults with SCD cope with and to explore the effects that these stressors have on mood and/or quality of life perceptions.


People with Sickle Cell Disease have many things that bring stress; pain, depression, hopelessness, etc. etc. etc. We have to live on despite these stressors and try to have a meaningful, productive lives...anyway.

The best way to contact Ms. Bazen is the web site contact page, her cell phone, email, or 1-800-464-8668 (in US) See card below for information.

If you decide to participate in this study, you will be speaking with Ms. Bazen who conducts a one-on-one private (confidential) phone interview. In this interview, Ms. Bazen will ask a series of questions related to living with Sickle Cell Disease and related stresses.

The outcome of this study is to gather data related to the stress that Sickle Cell patients endure and find ways to better treat them (us).

Check out the web site at http://www.scdstresstudy.com/

We can all have our voice heard on this one.




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Sickle Cell Disease Around The World

I was researching Sickle Cell Disease around the world…I’m just a curious soul…. and what I kept finding (in different reports) was the same quote: “The origin of Sickle Cell Disease is Africa and primarily affects people of African decent.” I even read one (racist) report that said: “The African footprint in the world is Sickle Cell Disease.” I was baffled. I’ve heard of cases of Sickle Cell Disease in India, Saudi Arabia, Asia, United States, Spain, Italy, Mexico and Africa.

My belief is that Sickle Cell Disease is a human condition, not just an African condition. I got busy researching to see if my belief was correct. What I found was related to genes and human diseases located on the World Health Organization’s (WHO) website.

The source of Sickle Cell Disease, I found, is not the African footprint, but DNA (DEOXYRIBONUCLEIC ACID). DNA is the blueprint of life and has the instructions for making each and every one of us. According to the WHO report, “Pure genetic diseases are caused by a single error in a single gene in the human DNA.”

The report goes on to say, Sickle Cell Disease is one of many “monogenic diseases” resulting from modifications (errors) in a single gene that occurs in all cells of the body. These monogenic diseases affect millions of people worldwide, and scientists estimate that over 10,000 human diseases are known to be monogenic.

Some monogenic diseases are:

Thalassaemia, Sickle cell anemia, Haemophilia, Cystic Fibrosis, Tay sachs disease, Fragile X syndrome (cause of retardation), and Huntington's disease.

The rate of all single gene diseases at birth is approximately 10/1000. This means for every 10,000 people born, 10 of them will have a monogenic disease.

So, is my belief correct that Sickle Cell Disease is a human condition? Yes. Like any of the other monogenic disease, Sickle Cell Disease is a boo-boo of the DNA….now let’s try to get it fixed!

http://www.who.int/genomics/public/geneticdiseases/en/index2.html#SCA

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Aging and Sickle Cell Disease

When I was 10 years old a well meaning doctor bent down to my 3 foot height and told me very gently, “You know, you’re only going to live to be 30 years old.” I blinked and thought, “That’s a long time from now.”

Fast forward thirty-eight years and I’m 48 years old and still alive.

That doctor didn’t realize that he had given a 10 year-old child a death sentence. He could not have imagined that his prognosis would sit in the back of my mind as I turned 20, then 30 and then 40 years old. As I aged, I laughed at that doctor’s prediction, but secretly I prayed for God to give me more time.

As time passes, and I age, I discovered that Sickle Cell Disease would take its place as the most important thing in my life. The effects on my body have been gradual, yet undeniable. Regardless of how well I “take care of myself”, I have to pay attention to everything I do as it relates to my health.

Recently, I heard a young man with Sickle Cell Disease say “Sickle Cell gets better as you learn how to live with it.” Sorry baby, that ain’t true. Sickle Cell Disease doesn’t “get better.” The lack of oxygen, low red blood count and trapped sickling cells eventually takes its toll on your joints, internal organs and your life. This is not bad news, it’s the truth.

There is good news, however. There are things we can do to help ourselves live and age well. I call them “the five mandatory things.” They are; drink lots of water (to keep your blood fluid), take vitamins (to get extra nutrients), rest, rest, rest (to rejuvenate your aging body), eat healthy foods (anything that assist in blood development {I know I hate liver too}), and exercise (mild movement to keep the aging body mobile and to increase oxygen). These five things have helped me live past my doctor’s dooms day prognosis.

Does Sickle Cell Disease get better? No. Do people living with Sickle Cell Disease get smarter? Yes.

The smarter you are the longer and healthier you’ll live. Will you still have episodes of pain? Yes. But, the better you get at managing your disease (doing those five things) the better you will manage the “triggers” of Sickle Cell “crisis”. The more clearly you are about accepting your condition, AND your responsibility to live your best life in spite of it, the better life will be. There are some uncontrollable issues like stroke, and spleen infarctions that can’t be managed, but so what.

We can hope for a “complete” cure, and in the meantime, also live full happy lives. I’ve even heard of people with Sickle Cell Disease living to be 70 & 80 years old. (I haven’t met any of them yet, but I hope to join their club of survivors.)

Do I know a thing or two about living this life with Sickle Cell Disease? Yes, I do. All 48 years of it (and past that darn number 30!)