"I feel welcome, connected and useful."
Chris Anderson, 40, has been a health care puzzle all his life. But thanks to a correct diagnosis – finally! – and coordinated health care from Courage Center’s Physicians’ Clinic, the puzzle pieces are falling into place and revealing a picture of purpose.
Born to his 40-year-old mother in 1970, Anderson was premature and, in a word, complicated. “I was actually pronounced dead, then revived,” he said. “I had a soft pallet that caused feeding and, later, speech difficulties. As a kid, I was forever getting sick with colds, sinus infections and unexplained pains.”
In spite of his poor health, he became a Catholic retreat leader and youth minister in his 20s and worked in New York with at-risk youth.
At 33 and back in Minnesota, Anderson experienced heart failure. “That’s when the attending doctor noticed my many, many symptoms and identified their root cause. He tested me for DiGeorge syndrome, a condition resulting from a deletion of part of the human chromosome 22. Sure enough, I have that congenital condition.”
Identifying the condition began to unscramble the puzzle of Anderson’s complex symptoms. The soft pallet, the low white blood cell count (caused by a malfunctioning thymus gland) and resulting low resistance to infections, the malfunctioning thyroid system and constant muscle pain and cramping, the low calcium levels, the heart disease, the learning disabilities, the mental health issues – all these symptoms are the result of DiGeorge syndrome. (See information at right.)
About two years ago, Anderson’s mental health symptoms became more pronounced. They included agoraphobia (fear of interacting in public), anxiety attacks, and post traumatic stress syndrome from his physical illnesses and the struggles of growing up with speech impairments and learning difficulties. Getting out in the world became overwhelming. Anderson sought help from Courage Center’s Adult Rehabilitative Mental Health Services (ARMHS).
“John White, my ARMHS counselor, suggested we coordinate my mental health care with my physical care by making Courage Center’s Physicians’ Clinic my primary care provider. That way, all my counselors and physicians would be on the same page, and I would be treated as a whole individual instead of as an amalgam of many separate parts.”
The change was remarkable.
“I’m so pleased to have all my mental and physical health care under one roof,” Anderson said. “It’s far less confusing and way more convenient for me. And it cuts down on my anxiety of coordinating appointments and driving, which for some people with mental illness issues, is significant. Coordinated appointments are a blessing.”
Anderson also believes that the quality of his care is improved. “Everyone here is very knowledgeable, not to mention personable. They are professional and excellent resources for finding answers to difficult health questions. And, because they are all working as a team to help me, I feel I’m getting the best care possible. I feel welcome, connected and useful. And I truly appreciate their humanity.”
While DiGeorge syndrome is not curable, its symptoms are now being better managed by Anderson under the direction of his Physicians’ Clinic doctors and Health Care Home model. His medications are coordinated to deliver maximum benefits without incurring side affects to his complex issues. And he now feels well enough to be an active participant in his health care. For example, he’s researching the Food and Drug Administration’s views on a new fish hormone injection that might replace his many calcium pill supplements, and is following the pioneering research of thymus transplantation.
Equally important, he’s getting out more. “Courage Center asked me to be on the Physicians’ Clinic board of advisors,” he said. “I like technology and I’ve done a bit of web design for friends and non-profits that I care about. I’ve offered some helpful hints to make the Courage Center website more accessible to people with disabilities. I’m proud of that.”
He’s also proud of contributing his talents to exploring the idea of using Skype-like technology – a sort of suped up video telephone via the Internet – as a tool to help physicians and their patients communicate more easily. “This could be tremendously beneficial, especially for homebound patients,” he explained. “Imagine showing your doctor your healing wound or improved range of motion while you sit in your living room and he or she remains in the clinic. And mental health counseling? It would definitely provide a huge convenience.”
Additionally, Anderson accompanied Courage Center advocates to the Minnesota State Capitol to talk about health care needs. “I’m fascinated with politics and would love to make a difference for people with disabilities. There are only two ways to know about these things: by having a disability or by living or working with people who do. I’m in a good position to help.”
Public advocacy on behalf of people with disabilities is definitely on Anderson’s to-do list. So is writing his book, its working title, Topher’s Story: A Life of Grace. “Given that most babies born with DiGeorge syndrome seldom live beyond 5 years of age, I’m one of the lucky ones,” he said. “There has to be a reason I’m still here. I’ve got work to do.”