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Educator led effort to help sickle cell patients

ST. PETERSBURG — Four decades ago, when close family members were diagnosed with sickle cell disease, Mary Murph refused to be paralyzed by fear. Instead, she scoured the country for information and soon established an advocacy group to educate and support others in the same situation.

This month, as the St. Petersburg chapter of the Sickle Cell Disease Association of America marks its 40th anniversary, the group's medical consultant Dr. Frederic Guerrier praised Murph's work through the years.

"Mary has done all that with very little resources and because of her, sickle cell patients in this county really get better care, because she is at the forefront to make sure that they get the medical treatment they deserve and the respect they deserve," Guerrier said.

"It's a very painful disease and because of the stigma of pain medication, a lot of sickle cell patients can be looked at as pain medication seekers or drug addicts. She has worked tirelessly so that patients can be seen as any other patient with a medical condition."

There has been progress since Murph founded her organization, including developments in treatment and establishment of a local outreach office at the Johnnie Ruth Clarke Health Center. Still, the only cure for sickle cell disease is a bone marrow or stem cell transplant. Murph, a retired teacher and guidance counselor in Pinellas County schools, recently discussed her commitment to the cause.

What are the goals of your organization?

I discovered that education is the number one priority in helping to eradicate this illness. Great strides have been made in the treatment of sickle cell in the last 30 years. Although we are looking back a century when sickle cell was discovered — way before other maladies that have gotten more attention — it lacks the attention. … We've got to keep it on the front burner. That's why I have stayed on it for 40 years. I feel that I am contributing to those who are less fortunate in health."

Specifically, what does your group do?

We do education and counseling. We have family support groups. We provide scholarships to sickle cell persons who are aspiring to continue their education. We also have a wishing fund. We've bought TVs, or sent people on trips to visit relatives and we do family emergency assistance, and that may be anything from rent to utilities. We also do a Christmas luncheon and gifts and referral services. And we have an outreach coordinator who makes presentations to groups, churches, social service clubs, anywhere he can.

How has the outlook changed for sickle cell patients since the organization began?

Now that we have newborn screening, that is a diagnosis that is made soon after birth and is followed up with education. When we first started out, back in 1972, when President Nixon passed the Sickle Cell Anemia Control Act, there were young patients. Today, I would say that the needs for sickle cell patients have changed, because the issues are more complicated and complex. When they become adults, sometimes they experience psychosocial and emotional problems, just coping with life in general. But persons with sickle cell lead normal lives when they are well and we have among our clients persons who have obtained master's degrees and have families.

Waveney Ann Moore can be reached at wmoore@tampabay.com and (727) 892-2283.

. If you go

Anniversary events

• Sickle Cell Disease Association of America, St. Petersburg Chapter, "An Evening of Jazz and Dinner Extravaganza," 6 p.m., Saturday, Hilton St. Petersburg Bayfront, 333 First St. S. Tickets, $50 each; (727) 896-2355.

• Grand Rounds is a forum for doctors, nurses and other medical personnel to learn about the latest developments in research, treatment and services for sickle cell disease. Guest speaker is Dr. Lanetta Jordan, chief medical officer, Sickle Cell Disease Association of America Inc., noon-1 p.m., Thursday, Bayfront Medical Center, 701 Sixth St. S, St. Petersburg; lunch-and-learn for patients and the community, 2 to 3 p.m., Barbara Sheen Todd conference room.

About sickle

cell disease

• A group of inherited red blood cell disorders

• Affects 90,000 to 100,000 Americans.

• Worldwide it affects people with ancestors from sub-Saharan Africa; Spanish-speaking regions in the Western Hemisphere (South America, Caribbean and Central America); Saudi Arabia; India; and Mediterranean countries such as Turkey, Greece, and Italy.

• Sickle cell-related deaths among black or African-American children younger than 4 years old fell by 42 percent from 1999 to 2002, coinciding with the introduction of a vaccine in 2000 that protects against invasive pneumococcal disease.

Source: Centers for Disease Control and Prevention

Educator led effort to help sickle cell patients 09/13/12 [Last modified: Thursday, September 13, 2012 11:30am]
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