Robin Powers, who has a degree in biochemical pharmacology of rare disease from Buffalo State college, a B.S. Robin has been advocating for herself since a young age. Now, Robin is using her personal experience of living with hypermobile Ehlers-Danlos syndrome and her medical training to reimagine the future of rare medicine
My perspective and memory is pretty good as far as my disease goes, dating back to when I was just a very young kid under 10. It is thus very impactful, but from before the disease presented itself I was already an advocate.
"It’s like I was born to advocate for my life."
"The pain started from the very memory of my own existence."
I remember my pains being dismissed for growing pains from a young age. This makes me confused as to what they were thinking, because I am not very tall, and was born with a failure to thrive—in fact I am under the average height for a female of my age.
I am only 4’11’’ ½ inches tall. Thus growing pains didn't seem like a feasible explanation for my symptoms.
This is something that I have heard from many and it is something that I have also seen in other stories of people who have Ehlers-Danlos syndrome. I cannot believe how many people have been dismissed as a child being told: “oh it’s ONLY growing pains”.
It is really shocking to me that doctors dismiss their patients as well as do some parents at sadly too many a time...I mean honestly that is one of the main problems these days. Some doctors do not like to listen to their patients and their patients become experts on their disease through experience and online education! Where else do doctors think they will get this information? The new face of medicine is patient-centred and the faster they come to this realisation the better for us all.
"When I was about 6 years old I believe I started to vocalise my always dismissed pain."
Pain, which as an adult, during a nerve conduction study, was found to be bi-lateral carpal and tarsal tunnel syndrome—common with hEDs (hypermobile Ehlers-Danlos syndrome) if the person also has problems with tight tendons. It is shocking to me how many signs were just ignored.
So I decided...
“Why not turn my weakness into my strength! Let’s get a degree moulded around it.”
My advocacy, positive actions and creative application of customised messaging and outreach has provided our campus population (Buffalo State College in NY) with an awareness of the Orphan Disease community and challenges the larger community to become engaged in critical thinking and meaningful outcomes on behalf of all. My effort and focus on my community earned, a summa-cum-laude GPA and “A” grade (4.0) in theme-related coursework of The Biochemical Pharmacology of Rare Diseases which I created out of the conferences, symposiums, advocacy days, days on the hill and workshops to integrate myself into the community as fast as possible.
Personally all that I can think is; disability or #RAREABILITY©? It makes me unique, eccentric, passionate and unstoppable in my pursuits. Additionally, my indefatigable pursuit to optimising research within the rare disease community is not merely an academic exercise. It is, in fact, my late advisor, Dr. Roswell Park IV, (who died of a rare cancer called AML) and our legacy as I was asked to carry it on .”
If I was to have my dreams come true, my greatest GOAL—WHICH I WILL DO, is to put 'hope' into the hippocratic oath, by creating a new career path in the medical community.
It will be a different type of doctor who is assigned to complex, rare, or unknown cases to aid in the advocacy that they need with a buddy system with experienced physicians, to avoid easy but undoable, detrimental mistakes in the care of rare patients. They will need many skills, such as a macroscopic view, a view of ALWAYS DOING WHAT IS THE VERY BEST FOR THE HEALTH OF THE PATIENT and looking at the BIGGER PICTURE, which, sadly, sometimes is not the case.
I have learnt much from my own experiences. I had my own team of physicians as well as others, such as my retired pharmacist who I have known for 17 years. I have known him since I took over my own medical care which thankfully was allowed when I was 15 because my mother was not engaged. This gave me the power and drive to advocate for my own health and needs from a young age.
I have a clear vision of how I see medical care for rare disease a vision which is shared by others.
One friend once said, “I truly would love it if YOU were my doctor as your ideals are very patient-centred as they should be.” This spurs me on to forge forward and drive a new era of modern medicine.
If there is one thing that I want to leave everyone with, it’s that to the question, “do you ever wish that you could get rid of your HEDS?” The answer would be NO, BECAUSE “I WOULD NOT BE WHO I AM TODAY!”
©2020 joint Research by Dr. Ansuini and Medical Researcher Robin A. Powers
Written by Robin A. Powers