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What Happens When Your Child
Let’s Connect: Becomes Your Patient?

SFHEF Spotlight

BY MARTINE MASSENGALE

One paragraph in my medical text-
SFHEF's Member book, that’s all I remember about sclero-
derma. In my 30-year nursing career, I
had never come across it, until my
Spotlight daughter was diagnosed, at 23 years
old. Scleroderma is Greek for hard skin.
November 2017 It is an autoimmune disease in which
the body produces too much collagen.
Since collagen is naturally the most
prominent and strongest protein in our
Santiago Leon, JD body, an overabundance of it can wreak
havoc on the skin and internal organs.
She’s always been prone to a weak-
Santiago Leon, J.D., is Senior Consultant/
Florida Practice Leader with BenRx Employee ened immune system, suffering asthma,
Benefits Consultants. In addition to consulta- eczema, and allergies from the age of 2.
tion on self-funded health plans, he advises Half her childhood was spent in the
employers on conventional group insurance, professional employer organizations hospital, mostly for infected eczema.
(PEO’s) and health promotion programs. He also practiced law for ten years and Strong IV antibiotics, like Vancomycin,
worked in a number of public and non-profit social service and economic devel- were pumped into her system as she
opment agencies. scribbled answers across her fourth
In addition to his professional work, he has taken an active role in numerous grade homework. The infections got so
community activities. He currently serves as a member of the Dr. Antonio Jorge bad at one point, she even contracted Martine Massengale (right)
Social and Economic Development Council (SEDC), an advisory committee to MRSA in her eye. Regardless of all the and her daughter
the Miami-Dade Board of County Commissioners. He served as chair of the Board missed school, she excelled at reading
of County Commissioners Healthcare Task Force, and was the founding chair of and writing; placing Honors throughout high school. By then we were so relieved
the Worksite Wellness Committee and the Committee on Health and the Built because she had outgrown her eczema and asthma problems, until she began experi-
Environment of the Consortium for a Healthier Miami-Dade. He also served as a encing odd symptoms at the age of 20.
director of Florida CHAIN (Community Health Action and Information Network) It all started with a white patch behind her ear. She came up to me and asked me if
and on the City of Coral Gables Insurance Advisory Committee, the School I knew what it was and I guessed vitiligo. She also started to experience numbness
Board's Advisory Committee on Efficiency and Competition, and the Miami-Dade and swelling in her hands, along with joint pain. Luckily she was diagnosed early by
County Living Wage Commission. our family rheumatologist. He pinched her skin and noted that it was thick, which led
He authored "Florida's Medicaid experiments haven't moved in right direc- him to test for the specific SCL-70 disease marker, and it came back positive. She
tion," op-ed in The Miami Herald, April 22, 2011; "¿Por qué esperar más por started taking immunosuppressants and vasodilators to slow down the disease and
atención médica para todos?" ("Why Wait Any Longer for Universal help with blood flow.
Healthcare?") in Punto de Partida: Stories of Truth and Hope, published by the Scleroderma has completely taken over her immune system these past seven years,
Human Services Coalition, 2007; and "Group Disability Insurance (LTD): tightening her soft skin to tight leather. Skin ulcers, body pain, heartburn and joint
Common Gaps in Coverage and Potential Remedies" in The Network (newsletter stiffness are the main symptoms she suffers from today. My experience in the field has
of the South Florida Chapter of the Association of Legal Administrators), August given me a gentle hand for administering at-home injections. If she has a terrible
1993. ulcer, I’m able to wrap and clean it with precision. I wash her hair, cut her food, help
He is a graduate of Harvard College and the University of Pennsylvania Law her get dressed, and anything else with which she needs assistance. Looking back, we
School. never thought it would get to this point, but this experience has changed everyone for
the better; including her.
The hardest part of all is that I can administer medications to sick patients, heal
them, and discharge them home, but I can’t make my own daughter better. Despite all
she’s going through, she continues to inspire me with her strength and resilience. She
speaks openly to the public about her journey and encourages other patients to per-
Subscribe to... severe. Every year we attend the Scleroderma 5K Walk, to support the research for a
cure. There is no cure as of today, so she will be my lifetime patient, and I wouldn't
SOUTH FLORIDA HOSPITAL NEWS & have it any other way.
HEALTHCARE REPORT today! For more information about the Scleroderma 5K Walk,
contact sclerodermasefl@gmail.com
call 561-368-6950 or subscribe online at
www.southfloridahospitalnews.com

16 November 2017 southfloridahospitalnews.com South Florida Hospital News