Monday, October 31, 2011

Global Sickle Cell Awareness

My personal crusade is to have Sickle Cell Disease recognized as a “blood disorder” and not a “black disorder.” This is not to ignore the truth about its origin. In regions of the world where malaria is found, nature allowed a mutated red blood cell to exist which had a benefit of preventing malaria. While preventing malaria, the mutated blood cell was inherited and thus, Sickle Cell Disease became prominent.

What I am interested in is bringing awareness to the fact Sickle Cell Disease is found all over the world.

Yesterday, I read a story about a family from Cameroon who were being deported from England because they were illegal immigrants. That is not the whole problem; the issue was that their three-year old son suffered a sickle cell crisis and deportation proceedings were still continuing. The fact that the child was in the hospital in England, “not moving, with high fever” did not stop deportation proceedings. Education, compassion and awareness was needed in this case.

I read a story about a footballer born in France, playing football in Spain. While he was training with the national team in the high-altitude commune of Tignes, it was announced that he was dropping out of the squad due to suffering severe intestinal pain and stomach cramps as a result of the altitude. A follow-up medical check revealed that the injury required a significant amount of rest. His football club in Madrid later revealed that the injury was due to asthenic syndrome, a secondary condition related to sickle-cell anemia.

Shall I go on?

In these examples, Sickle Cell Disease appears in two different countries. As we bring awareness to this “blood disorder”, maybe that family from Cameroon might have been allowed to stay (compassionately) because their young son was too weak to travel.

And, the footballer in France might have been tested at birth, or prior to playing football like the NCAA does in the USA. He would have then discovered he had Sickle Cell Disease and also, through education, known he could not tolerate high-elevations.

We need global awareness, information, and communication. No shame, no stigma, no medical racism, AND no problem.

Did you know Sickle Cell Disease is found in many nationalities?

(Per Spanish reviewer) ¿Quién está en riesgo?
Muchas nacionalidades: Afro-Americanos, Latino Americanos, Italianos, Griegos, Árabes, Africanos, Caucásicos, Indios.

Yes, in Latin countries too!

Saturday, October 22, 2011

Airline Travel & Oxygen

I wrote a blog post “The Best Therapy,” about my love of travel. I received many favorable responses. I was excited about hearing from other people who love to travel, like me, despite dealing with a disability. I was excited until I received a letter written by Dr. Sota Omoigui, from the L.A. Pain Clinic in Hawthorne, CA.

Dr. Omoigui wrote a letter to The Open Hematology Journal, 2010, entitled, “Patients with Hemoglobinopathies Require Continuous Flow Supplemental Oxygen During Commercial Airline Flights.” In this letter Dr. Omoigui identified the results of a study he performed on people with sickle cell disease while they flew on commercial airlines.

The article is complex, but the conclusion is very clear. People with diseases of the hemoglobin (i.e. sickle cell disease) lose oxygen levels during airline flights. Less oxygen levels cause secondary issues like; avascular necrosis, splenic infarctions and bone pain.

Dr. Omoigui suggests, for flights longer than one hour, that commercial airlines should be mandated to provide supplemental oxygen (via nasal cannual). This is wishful thinking, asking airlines to give anything...for free. Maybe, they could be held accountable to comply with the ADA laws to provide "reasonable accomodation" for people with disabilities?

We patients with sickle cell disease could ask our doctors, when we consider flying longer than one hour, for an oxygen prescription. I know I will. I love to travel more than I am vain about carrying a portable oxygen tank with nasal cannula attached.

Check out Dr. Omoigui’s webpage for helpful pain care information:

L.A. Pain Clinic

Monday, October 17, 2011

An Artist Voice for Sickle Cell Disease

Let's not forget Nazaire, an original voice for the awareness of sickle cell disease. Through his art,featured here, he brought a stark reality to the suffering we all know too well.

Check out his website Sickle Cell Art, and let's continue to support his efforts to make the world more beautiful through his art.

Friday, October 7, 2011

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: (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