A big step for little people

MANILA, Philippines - When Sarina Pasricha, 30-year-old graduate school student, was moping in her first weeks at the Good Shepherd/ Penn Institute for Rehabilitation Medicine, Prof. William Wilkinsky, a PhD in Psychology, told her to move around and visit other patients. So for one full month that Sarina was in the center, she had physical therapy in the morning, occupational therapy, and recreational therapy in the afternoon, and in between, she visited all the patients on the third floor. So, she got to know their individual stories; about two are war veterans who were based in Zamboanga or fought in the Philippines, Vietnam, etc. An African-American is a social worker, a mother who sued the state of Pennsylvania for not giving birth certificates to children born out of wedlock. She won the case and children born outside wedlock can get their birth certificates now because of this heroic woman. She also worked in the mediation of gang wars among the youth of Philadelphia. And she founded the first Odunde Day, an African-American festival of music, dancing, and a street market, where Sarina danced from her power chair with the street dancers for the first time since her major spinal operation. 

Indeed, the stories from the Rehabilitation Center are stories of heroism and bravery. One day, Sarina will write about them. Already, Sarina has gotten featured in a magazine doing petting therapy with dogs, cats, and rabbits. Then she is writing a feature article to be published for the first anniversary of the Rehabilitation Center.

Recently, before going home, Sarina did her rounds of farewell, and the nurses were kidding her that she need not campaign for governor of the center, they would appoint her!

Now, we are back home after Sarina has been principally diagnosed and undergone what is medically known as T11-L5 hemilaminectomy and T11-L4 spinal fusion, with secondary diagnosis of achondroplasia, spinal stenosis, kyphosis, depression, and anxiety.

Dr. Nader Hebela, a top Egyptian-American orthopedic surgeon, and Dr. John Lee, a top Korean-American neurosurgeon, both faculty members in Medicine at the University of Pennsylvania, together with a team of five anesthesiologists performed the delicate surgery on May 12 at the Pennsylvania Hospital. Sarina spent three days in the ICU and three days in the ward. Then she was transferred for one month of post-operation care at the Penn Institute for Rehabilitation Medicine.  

Finally, we brought her home in a medical van that can transport her in a power chair. We also brought home a walker and a commode, and balloons. At home, the information desk and security staff welcomed her with hugs and flowers.

For quite some time, there is a private nurse that visits her to get her vitals and supervise medication. There is also a physical therapist and an occupational therapist who work on her at home. She also gets physical therapy as an outpatient at the Penn Rehabilitation Center near the student dormitory.

Last Thursday, she attended consultation hours with her graduate school professor for this summer; she visited the department office and hugged everybody including her director, and then she met the dean. She went shopping in the CVS pharmacy and came home alone in the power chair. She told me that now she feels free and independent!

She starts classes on Monday in an intensive summer course to keep up with the sessions that she has missed.

I feel that with this happy story, I should start an advocacy for dwarfs and midgets, for medical research and their health issues.

According to Dr. Sally Bowman, there is little research available about small people. We do not know about their life span and health issues, health risks, and health needs.

For example, we only know that their joints are prone to debilitate through age, their spine can curve, their legs get weaker. And yet, we expect dwarfs and midgets to lead and work without medical care and assisting devices.

Little people are neglected. We expect them to walk as fast as we tall people do. When in fact, it takes them two steps to equal to our one step and keep pace with us.

We expect them to climb up jeepneys and cars, when they cannot step up that high. It hurts the spine to climb up.

We expect them to carry heavy load or balance trays as waiters, and laugh at them when they stumble.

But in a mountain of South America, there is research being done on dwarfs and midgets and why none of them ever get sick of cancer. What is in their genes that makes them immune to cancer?