The Samurai Caregiver

Coincidence or Not???

Posted on: September 30, 2011

(originally posted 12-9-2008)

I believe most of the evolved ones of us on this site know that there are no coincidences and that there are no accidents…but it sure is interesting to see one manifest as evidence of this universal law every now and then.
…this is so weird but I just gotta tell ya’ [grin]
Saturday evening, my husband and I rented and watched the X-Files movie that came out over the summer. I am a big X-Files fan so please indulge me for a moment here.
Being a professional clinician for almost three decades, I, of course, am always drawn to the medical nuances that are presented to the X-Files character, Scully, MD. One of the  medical nuances she was presented with in this movie was Sandhoff’s disease. It’s a very rare, painful and terrible disease; one that I was unfamiliar with. It was presented and handled very tastefully in the movie. With this terrible disease being considered one as a sure death sentence cure, Scully begins to do her research to see if there is anything out there in the literature that could present her with some option, some ray of ‘scientifically based’ hope that she enact to save a child patient with whom she has developed quite a fondness for. Apparently there is something with this child that resembles the illness her own child had prior his death. Scully was helpless to help him; perhaps that’s why she was so dogged to try to assist this one.
Scully comes across some research on the internet about some experimental clinical trials that were demonstrating some promise for treating this disease. Stem cell therapy via an intrathecal route. Chances were small for a cure but given the odds of no chances and the hospital preparing to send this child away to a hospice for palliative care, it was better than nothing.
So where’s the coincidence?
Sunday, here in ATL, one of my friends announced in a class I was taking that there was a little girl that had a terminal disease and that she wanted us to pray for her. She described the situation …and when she got to what the child was suffering from it was…yes, you guessed it , SANDHOFF’s disease!!!!
Yeah…my ears perked up like a dobermans, for sure. I couldn’t believe it! After she made the announcement , I went to her to get the flyer from her to make sure that was what she said. Sure enough, that’s exactly what she said; Sandhoff’s disease.
So…I tell her I may be able to get some information to her to pass onto this family that they may want to discuss with their physician and that I’ll get back with her later.
…and,  of course, I scurried home and hopped onto the computer, just like Scully, and looked up this disease …and yep, it was there…and yes, it is prognosed as fatal/terminal…and YES! there is an experimental  treatment using stem cells that is promising, but…etc., etc., etc.
So, I have passed this on to my friend to pass on to the parents of the little girl…
 (I guess I need to end this with the X-Files theme music playing!)

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The Samurai Caregiver

Sybil L. Ingram, MBA, Ph.D.

Dr. Sybil Ingram is a respected and experienced professional in the areas of healthcare information systems and regulatory compliance issues with significant knowledge on INFOSEC, NIST, FISA, FISMA, CFR 210,211 & 820 as well as Lifespan Respite Care Act regulations. With over twenty years of healthcare experience, she has been one of the nation's foremost speakers and active consultants for the HIPAA implementation challenges, addressing all major aspects of the Administrative Simplification Subtitle and affected entities/stakeholders. Dr. Ingram has served as a clinician, clinical researcher and instructor, emergency preparedness and readiness specialist as well as serving as an independent validation and verification compliance manager for multiple national providers of healthcare services. She has held key positions for healthcare industry leaders such as HBOC/McKesson, Johnson & Johnson, Abbott Labs, the Georgia Technology Authority and the Centers for Disease Prevention and Control (CDC). In addition, Dr. Ingram is nationally board certified by the American Society of Clinical Pathologists, a former associate with the American College of Healthcare Executives, founder of Ingram And Associates, a certified INFOSEC professional by the Information Security And Audit Control Association and the US National Security Agency. As a volunteer, she is an active senior Georgia state representative for the National Family Caregivers Association and has an inventor's patent (pending) registered with the U.S. Patent & Trademark Organization. Dr. Ingram speaks nationally and internationally on topics that address information privacy and security as well as family care giving issues.

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