Young Adult Council

Doug Forbis, BS

My name is Doug Forbis and I’m from Spartanburg, SC.  I was born with a condition called sacral agenesis where portions of my spinal cord didn’t form correctly.  I’m missing the entirety of my sacral/lumbar vertebrae and even a couple of thoracic vertebrae.  When I was 2 years old, I had a bilateral leg disarticulation to help my mobility.

And I haven’t looked back since.

I grew up just like every other kid.  I cracked jokes, I fought with my big sister, I got in trouble.  Nothing was really different for me other than the fact I used wheels instead of legs.  However, growing up I was the only person with a disability I knew.  When my parents and I needed ideas for something (things as simple as ordering a new chair), we had to trust doctors and vendors completely.  We didn’t know any better.

Then I found the world of wheelchair sports when I was 12.  Suddenly, I had friends who had similar issues to me.  My eyes were opened as I quickly became ingrained in sports and discovered how much there was to learn about disability and medical issues. Through sports I’ve gotten to travel the states (ranging from Connecticut to California) and the world (Australia, Brazil, Canada) and I found that the experience of life was universal.

Well, that’s why I’m on this council. People shouldn’t have to wait until they luck into it to find information or get a recommendation on how to approach any issue they’re having.  As I competed, I started to realize younger athletes were coming to me not just with questions about sports, but with questions about health and society’s view of people with disabilities.  At this point, I decided I could use my life experience to work with kids and help them at a younger age rather than sitting around pretending like I had nothing to give back.  The world of sports had helped me, so why not help these kids who I remember being just a few years ago?

For college, I attended the University of Illinois and got a B.S. in Kinesiology with correlates in coaching and physical disabilities.  While there I participated in disability awareness and community outreach programs through school and volunteer coached a wheelchair sports team out of Chicago.  In the time I wasn’t competing or studying, I worked as a camp counselor for children with disabilities and medical conditions in Illinois, Iowa, Georgia, Florida, and North Carolina.

I currently am going back to school at Converse College seeking a Masters of the Art of Teaching Special Education with specialization in mental disabilities and emotional disabilities.  I hope that through these classes and my future work as a teacher that I can continue to reach children who need support not just as a well credentialed professional, but someone who lives it.

As far as my life outside of school, I love sports, video games, music, movies, reading, trivia, and all around being a geek. I have great friends, an amazing girlfriend, and a supportive family.  I wouldn’t change a thing.

I’m going to end this rambling with a quote from Douglas Adams (one of my favorite writers).

“I seldom end up where I wanted to go, but almost always end up where I need to be.”

Don’t sweat the small stuff folks, the universe has a way of things working out as they should.

Amy R. Long, MD

Amy Long grew up as a navy-brat all over the US. She is a recent medical school graduate of Wake Forest now living in Cincinnati Ohio starting her first year of pediatric residency at Cincinnati Childrens! Her passion for young adults with CMCD stems from her own experiences living with a rare condition called Kniest Syndrome. Kniest in her case includes osteoarthritis, hearing loss and myopia (nearsighted).  With the help of a manual wheelchair (THE GREEN MACHINE), bilateral hearing aides, contacts/glasses and most recently a shiny new hip (hip replacement) she lives independently, practices medicine and travels the world.  Amy’s dream job is to teach pediatrics and design early intervention programs for CMCD in developing nations.  She also hopes to help develop medical and educational pathways that can lead to fulfilling, independent, healthy adult lives for CMCD in the US and beyond. When not doctoring or playing patient she enjoys traveling especially to Eastern Europe and Africa, reading, gardening and eating/cooking good food.

“Those that say it can’t be done should get out of the way of those doing it” – Chinese Proverb

Azwa Salleh, BA

Azwa is a young adult diagnosed with Nephrotic Syndrome when she was 11 years old. The disorder causes the kidneys to leak large amounts of protein into the urine. She went through three rounds of high medication treatment over a four-year span.  During her treatment, she took time away from school, experienced swelling in uncommon areas and gained and lost significant amounts of weight in short periods, which affected both her academic and social life. As her Nephrologists’ youngest patient, proper dosage amounts and treatments were “test” amounts, making side effects frequent. Due to a lack of support for young adult patients in both her community and the medical community, her parents struggled with treatment options. Azwa learned at an early age to be a proponent of her health care.

Her Nephrologists encouraged careful monitoring of her health throughout her adulthood and warned about the possibility of a relapse. Today, she is 25 and fortunate to experience only occasional relapse scares and possible lingering side affects from her treatment. A California native, Azwa recently relocated to Washington DC. But leaving her job and relocating was not as easy decision in large part due to having to rebuild her network of physicians and finding the “right” affordable and comprehensive health care.

She joins the PPC Young Adult Council to be a voice for quality health care and emotional, physical and financial support for an underrepresented population.

“Life is 10% what happens to us and 90% how we react to it.” – Dr. Dennis Kimbro

Jodie Senouillet, MS

My name is Jodie Senouillet, I am currently 28 years old, and I was diagnosed with congenital heart defects as an infant and underwent my first heart surgery at ten days old.  In adolescence I was also diagnosed and treated for scoliosis.  I completed my undergraduate degree in biology and anthrolopogy at Dartmouth College in 2005.  During my time at Dartmouth I became a mentor and leader for the Steps Towards Adult Responsiblity, or STAR program.  In STAR, Dartmouth students who lived with chronic illness were mentors to adolescents in the area who also lived with chronic health conditions.  Through monthly group meetings and social events, I learned how important it is to have a strong support system when living with a chronic illness.  I then attended the University of Washington in Seattle in a PhD program in pathobiology, the laboratory study of different types of germs that make people sick and how it affects populations.  One year into my program I unexpectedly had to undergo open heart surgery, and following complications I was declared in congestive heart failure (at the age of 23).  I was unable to continue my original course of study and career goals due to the demands of my illness.  I completed my Master of Science in Pathobiology in 2008.  I then made a career change, moving cross-country to Providence Rhode Island to coordinate The Adolescent Leadership Council (TALC) program at Hasbro Childrens Hospital.  Based on the STAR program, TALC focuses on providing social support to adolescents with chronic illness while teaching skills needed for transition to adulthood and the adult medical system.

My goal is to live a full, healthy life.  It hasn’t been easy.  I have had multiple people tell me that I could technically be considered “disabled” and that I should stop working and move back in with my parents while going onto disability.  No one wanted to hear that I was young, that I still had a lot to give to society, and that there was no reason for me be on disability.   I would say that I was pretty savvy going into my 2008 heart surgery.  But even with the knowledge I had many problems navigating the health care system.  I have learned a lot, and I want to use my experiences to help other adolescents and young adults with chronic illness navigate the complex systems of the adult healthcare world.  I have learned to be a strong self-advocate and “expert” about my illness and I hope that I can help others learn the skills to do this for themselves.  I am involved with PPC because I dream that one day the rules of society will not make it so that people like me, who have the ability and desire to positively contribute to society, will be able to do so in a way that is accommodating to their health condition.

I believe the quote by Mahatma Ghandi,  “Be the change you want to see in the world”, accurately describes my outlook in life.

Charles Senouillet

My name is Charles Senouillet and I am a 27 year old peer advocate who has experience from both sides of the health care system – as a hospital employee and as the husband of a young adult with a chronic medical condition (Jodie Senouillet, above).  I am involved with PPC because I want to help change the perception of young adults with chronic medical conditions and disabilities.  I have had many experiences dealing with doctors and hospitals in regards to my wife’s condition.  Many times there have been problems because my wife looks healthy, so they think she is faking it when se says she is sick or do not take her seriously.  We have also had multiple people come up to her when she uses her handicap parking permit and say “You really shouldn’t use someone elses pass”.  These things are all hard on her, and I don’t think its fair that she has to live with the double standard.  While we manage very well, the average person doesn’t realize that we may have to change our plans for the week because of how my wife is feeling one day, and the ramificiations it will have for the near future.  It seems like many of the people we interact with, both doctors and the general public, have an idea in their head about what someone who is “sick” looks like, and how to treat someone who is not.  I hope that we can change these perceptions to make it fair for everyone living with chronic medical conditions and disabilities –even if the condition is invisible most of the time.