(NEW YORK) — At only 26 and a new father, Jack Osbourne was diagnosed with multiple sclerosis earlier this spring.
The son of Ozzy and Sharon Osbourne told People magazine he was diagnosed only two weeks after his daughter, Pearl Clementine, was born in April.
“I was just angry and frustrated and kept thinking, ‘Why now?'” Osbourne told the magazine. “I’ve got a family and that’s what’s supposed to be the most important thing.”
While Osbourne is younger than the average patient who is newly diagnosed with MS, it is not by much. The average age at which a patient is diagnosed is 37.
Multiple sclerosis is an autoimmune disease that affects the brain and spinal cord. The disease attacks the myelin sheath, a protective covering that surrounds nerve cells, and approximately 400,000 Americans have MS, according to the National MS Society. About 200 people are newly diagnosed each week.
While the disease is degenerative, symptoms, which affect the muscles, bowel function, vision, nerve and sexual function and personality, can vary and range greatly in severity.
Because of the typical early onset of the disease, Osbourne, and many other newly diagnosed MS patients, are at the threshold of many life decisions, including career, marriage and children.
“People have spent their entire life up until the point of diagnosis imagining their life in a certain way, they have to interpret how they’re going to let go of that picture and how they see themselves, and fit that new information into the sense of who they are,” said Rosalind Kalb, a clinical psychologist and director of the Professional Resource Center at the National Multiple Sclerosis Society. “It’s a grieving process, and you can’t move ahead on how you’re going to live with MS until you spend a little time with the loss of a life without MS.”
While the diagnosis can throw one’s life, particularly a young person’s life that isn’t fully settled, into disarray, patients like Osbourne should not jump to any conclusions about how the disease will run its course, said Kalb.
“It’s important for patients not to rush out and quit their jobs or break up relationships because they may be able to live a full life with manageable symptoms,” Kalb said.
Doctors and patients do not know how their multiple sclerosis will behave in the early weeks and months after diagnosis, and it is really only in hindsight that one can understand the severity of their disease.
“While the public face of MS may be the wheelchair and problems walking, most people with MS never need the assistance of a wheelchair, but instead live with uncertainty,” Dr. Daniel Kantor, president of the Florida Society of Neurology and member of the American Academy of Neurology, wrote in an email. “We are blessed in America to live in a country with equal access to those with disabilities and so the hardest issue to cope with in MS is the fear of the unknown.”
Because of the sudden change and the myriad of unknowns, Kalb said counseling is sometimes recommended to help people cope with the new diagnosis, but not always. Most importantly, she said patients need “access to good information and support from people around them.”
“Most people do not have the luxury of psychological therapy after a diagnosis, but this would be ideal,” said Kantor. “We welcome the Osbournes publicly supporting the notion of seeking counseling. This may benefit many other less famous patients.”
Kalb said the people who tend to have the most difficult time with their disease are the ones who approach it with a “I’m going to beat this” attitude.
“We don’t know how to beat this disease yet, we don’t have a cure, but there are so many more treatments available than just a few years ago, so it’s better to prioritize the days’ challenges, and start that treatment early,” she said.
Patients experience a wide range of early onset symptoms of the disease, but people will typically notice changes in their vision, especially when feeling overheated, and numbness, tingling and other strange sensations in their limbs and extremities. Others will experience pain or changes in their bladder function and memory.
Osbourne told People magazine he was diagnosed with the disease after he lost 60 percent of his vision in his right eye.
“The good news is that we have eight different treatments as a way of managing the disease,” said Dr. Tim Coetzee, chief research officer with the National Multiple Sclerosis Society. “We have another three looking for approval from the FDA right now and three or four in late-stage clinical trials.”
The advances offer options to help modify the disease and ease symptoms of decreased mobility and nerve function. Drugs like natalizumab are used to prevent flare-ups and inflammation.
Doctors recommend that patients begin treatments as early as possible, as that is when the medication is most effective in delaying and reducing events and onset, Coetzee said. Otherwise, patients are encouraged to maintain a vigorous, active lifestyle and a positive outlook.
“It’s important to maintain a healthy but pragmatic approach to this disease,” said Coetzee. “As with anything, we don’t know where we will be in the future with this disease, but even just 30 years ago, there were so many unknowns. While there still are unknowns, there is a lot more we know about symptoms and treatments and a lot more knowledge to build a foundation on.”
Copyright 2012 ABC News Radio
Natalia Hepworth, EastIdahoNews.com
Stephan Rockefeller, EastIdahoNews.com
Sandee LaMotte, CNN