Three Strikes You're NOT Out - Sickle Cell

This is an inspirational story of The Tyler sisters, who all got Sickle Cell Disease from both parents who only had sickle cell "trait".

This is why sickle cell testing is critical prior to getting married or having children, because it gives you valuable information. It will let you know (the probability) of having children with the disease. But don't let this testing deter you...you can't fight love. If after you've married and had children, and  your newborn test positive for sickle cell disease there is still hope for your children.

Just look at The Tyler girls....living, managing and thriving.....also known as #blessed.

Find out what their doing through their foundation
 

MTS Sickle Cell Awareness Foundation 

 

You Can Do Anything Despite Sickle Cell Disease

I have a new hero and his name is Billy Garrett, Jr., and he's proving that we can do whatever we put our minds to.

He proves this on DuPaul University basketball court every week. He's my hero because he is an overcomer and refuses to let Sickle Cell stop him from achieving his goals. Check out Billy's inspiring story and don't forget his name Billy Garrett, Jr. 

The price of fun - life with sickle cell

I recently attended my twin grand children's 2nd birthday party. I travelled to an area that recently had a rain storm. Though it had past, the chill was still the air. The chill got into my arm and that was it! I spent the next week fighting with sickle cell. I did everything I knew to NOT have a crisis. I used heat, pain killers and a whole lot of prayer.  Fast forward, I beat the odds once again.

As I age, I have to consider everything I do. I must consider travel time, what the temperature is, how much "FUN" I will be having, and recovery time from this fun.

My goal is to see these two babies graduate college, get married & have children of their own. This is my prayer. And, I'm going to do everything I can.....God willing....to see these wonderful days.

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.

Young People With Sickle Cell Need Help Too!

Young people with Sickle Cell Disease often wonder, "Why me? Why do I have to have this disease?"

These questions often lead to anger, despair and resentment. This resentment often leads to non-acceptance of their illness and to ignoring the need to take care of themselves.

Death amoung young people who are in transition from childhood care to adult (self-managed) care is entirely too high.

These young people in transition need our support, love and encouragement. They also need to see examples of older adults "living" with Sickle Cell Disease and living well despite the difficulties.

Here's some help and resources:

Teen Health - Childrens National Medical Center Transition Education

Teen Health - KidsHealth.Org - Transitioning Your Medical Care

Pyschosocial Help - New Jersey Department of Health

Living with your teen - North Carolina Department of Health

Faces of Sickle Cell Disease

Dr. Carolyn Rowley P.H.D and The Cayenne Wellness Center is creating
"FACES of Sickle Cell Photo Project".

They hope to compile photos of people with sickle cell disease into a book or museum exhibit in order to exhibit the faces (& lives) of people affected by the disease.

***How it works is Dr. Rowley makes an appointment to come to someone's home, office, or wherever they feel comfortable meeting (cafe, park, museum, etc). The session takes less than 1.5 hours, during which Dr. Rowley takes photographs of the person and makes an audio recording of the conversation about living with sickle cell disease. People can take the photo with a significant other, child, pet, etc. - whatever they prefer.***

If you are interested in lending your face & story in this exhibit.
email: bella@cayennewellness.org (also, let her know where you are)

or call

Cayenne Wellness Center and Children's Foundation
PO Box 3856
Glendale, CA 91221
818.377.5120 tele
818.840.9485 fax
www.cayennewellness.org

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

Living Longer

In the United States when President Nixon signed the “Sickle Cell Control Act “ (1972) the life expectancy for people living with sickle-cell disease was 14 years old. In the rest of the world it was 5 years old (per World Health Organization).

Since that time, in America, treatment and care for pediatric patients was greatly improved. I remember going to a sickle-cell disease clinic in 1972 where doctors finally spoke to me about the disease and what it meant to live with it. I was twelve.

Fast forward to 2011, I’m fifty-one years old and many of us pediatric patients are still alive. We’ve lived passed the prognosis of death (14 years) and we are now in our fifties and sixties. This is where the story gets complicated. People with sickle-cell disease (since 1972) received better treatment and that extended our lives.

Currently, in America, healthcare organizations (and insurance companies) do not know how to deal with aging sickle-cell disease patients. Now that we’re living longer, we’re dealing with long-term complications such as; heart disease, stroke, renal failure, retinal detachment, leg ulcers, etc. etc. etc.

In addition, many sickle-cell patients are on Medicare and Medicaid. Since there are no clear guidelines on how to treat these aging patients, Medicare and Medicaid are not approving or reluctant to approve treatment & medications.

The National Heart, Lung, and Blood Institute (NHLBI) has recognized this issue and is addressing it by creating “Treatment Guidelines” for the medical community.

By 2012, the healthcare community will know “what the heck” to do with aging sickle-cell patients. They will have guidance on treatment and care of adult sickle-cell patients, just as they did for pediatric patients in the 1970s.

There is still work to be done to get Medicare and Medi-cal to NEVER DENY treatment or medication for people suffering with sickle-cell disease. But that’s a battle to be waged toward our elected officials by notifying them, “This is unacceptable!” First things first.

People with sickle-cell disease are living longer, thank God, and now the healthcare community will get information about treatment and care for us. All we want is to live happy and healthy lives, now someone’s willing to help.

Thank you NHLBI for taking the lead in this effort.

(Information from teleconference meeting held with NHLBI and various Sickle-cell Disease Advocates and bloggers September 2, 2011)

listen to meeting @ (855) 859-2056 #97067391, (give your name and Our Voice blog)

Living

I was thinking about the new year and all the possibilities of opportunity. I reflected on my hopes for publishing my book (this year), and my desire to maintain good health and strength in order to fulfill new dreams.

All this reflecting left me with a sense of gratitude to just be alive to see this day.

To live with sickle cell disease is no easy task. Despite pain (daily), mood swings, and general life issues like rent, food and health care, living with sickle cell disease is hard.

Just getting up with a positive attitude is sometimes difficult. Hoping for any kind of future is sometimes senseless, and dreaming about achieving any goal can be futile. But people "living" with sickle cell disease MUST push on.

Some days are worse than others. The relief of pain medication doesn't soothe sorrow that comes from a life of suffering. Getting tired of being tired drains any hope we fight to hold on to.

But we must live on.

Living with sickle cell disease is our cross to bear, everybody has one. We choose to lift this cross fighting everyday with strength, positive thinking and perserverance or we don't. We give in or we give up this fight, it's our choice.

My personal choice is fight and win. Keep dreaming, keep believing, and keep getting up. Acknowledge the pain, get a remedy and move on. Cry if I want to cry, then wipe my tears and start over again. Pray about everything and believe there is a God who cares. Smile at the world and lend a hand to someone else hurting.

That's my answer to living with sickle cell disease. What's yours?

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