Q: Thank you for meeting with us today. To get started with, we are wondering why you have become involved with the MS Society?
A: I received a degree from Rockhurst University in Non-Profit Managing. I did not necessarily seek out the MS Society as my first choice for employment, but it fit what I wanted to do with my degree.
Q: How long have you been working with the MS Society and what do you do at the society?
A: I have been with them since I graduated, so it will be about a year in May. My job description is the volunteer coordinator. What I do is find people interested in making a difference concerning the defeat of MS and try to mobilize this group of people. We fundraise, have awareness meetings, and organize support groups for those with MS.
Q: What are some of the symptoms associated with the disease and what group of people are most affected?
A: To start with, caucasian people are most often affected by the disease and the majority of these people are women. Approximately two-thirds of all cases involve women. Symptoms in these cases vary greatly depending on the type of MS, which can range from moderate to severe. Some of the more common symptoms involve loss of bladder control, a tingling in the extremities, decreased cognitive ability, sexual problems, and an awkward gait. When these symptoms are active they are known as attacks, exacerbations, or relapses. When symptoms are suppressed they are referred to as remissions.
Q: Are there different types of Multiple Sclerosis?
A: Yes, there are four: Relapsing - remitting, primary - progressive, secondary - progressive, progressive - relapsing.
Q: What types of treatments are currently available for people with MS?
A: There are six medications currently approved by the FDA. Avonex, Betaseron, Copaxone, and Rebif are all injections that can be received. Tysabri is an infusion drug. The other option is Novantrone, which has proven to slow down the progression of MS.
Q: What are some of the common misconceptions about this disease?
A: The most common misconceptions simply stem from the fact that people do not understand the disease very well. They do not know the debilitating effects MS can have on a person's cognitive effects and never become educated about them. I also hear of people mistaking MS with MD (Muscular Dystrophy). I actually heard a guy at a conference once refer to it as Muscular Sclerosis.
Q: Take your best shot at why a doctor/researcher who studies this disease should know about evolution.
A: This one is kind of a tricky question. The big thing I would say is probably that they need to understand how the disease is progressive and thus research medications that can deal with these changing conditions.
Q: How important is the search for a cure and why?
A: Extremely important! There are 400,000 people nationwide that are afflicted with this disease, 3300 of which are located in the Kansas City area. There is a whole society that is aimed at better understanding this disease, as well as finding a cure. More than 300 research grants and fellowships are funded by the National MS Society each year.
Q: What is the responsiveness of the general public to multiple sclerosis?
A: The biggest thing with the general public is that they are not very educated in the area of Multiple Sclerosis. They don't realize the importance of funding the research and are not as willing to donate as they maybe could be.
Q: What can the average person do to improve research and funding for this disease, both locally and on the national level?
A: There are actually several things that people can do to help fund this research. They can support legislation for advances in research (i.e. stem cells), they can participate in MS awareness week which is March 10 - 17, they can donate/participate in events all across the country, they can restrict the money they donate to just be used for research...there are lots of ways people can get involved.
Q: What is one thing you would like people to know about MS and those affected by this condition?
A: I would have them know that this disease is not exclusive, and as far as anyone knows, it could affect anyone in anyway at anytime.
Q: Alright I think that about wraps it up. Thanks for taking the time to meet with us today!
A: Oh sure, no problem.
Interview With Susan Schlosser (a.k.a. Stephanie's mom)
After our interview with Laura Bryon, I thought that it might be a good idea to have the patient's perspective on these issues and questions, concerning multiple sclerosis, for comparison. So, I called up my mother, who has been diagnosed with MS as of 7 years ago, and asked her the same questions, previously asked of Laura Bryon, of the MS society.
Multiple Sclerosis:
Q: What is multiple sclerosis?
A: The degeneration of the myelin sheath surrounding the nerves of the CNS.
Q: What are the typical symptoms of this disease? And what is the diagnostic accuracy pertaining to MS?
A: Some common symptoms are macular degeneration, bowel and bladder dysfunction, depression, loss of function in: speech, cognative function, fine motor skills, balance, stamina, immune suppression.
Diagnosis of MS is not very accurate. We need more research to identify the foundations for proper diagnosis, because the symptoms are too broad and could be a number of things other than MS. Even after a spinal tap, CT scan, and identification of lesions, I still wasn't officially diagnosed with MS. There is no "complete" method of diagnosis and a patient can go up to 15-20 years without official diagnosis and proper treatment of this disease.
Q: What treatments are available for MS patients? And which are most common?
A: First of all, they aren't really "treatments" for MS, but only aides in keeping symptoms at bay and boosting the immune system in order to prevention a full-blown exacerbation. They are not always effective.
The most commonly used treatments are injections, such as rebif or copaxone. There are a nuber of medications for the treatment of symptoms: providial for fatigue, neurotin for nerve pain, oxybutinin for bladder and bowel complications, and various anti-depressants. Other treatments include physical, occupational, and phsycological therapy.
Q: What is the average dollar amount spent, by an MS patient, for treatments each month/year?
A: For medications alone, at least $30,000 per year. Ex. Right now, it's about $1500 per month for copaxone and $1000 for other pills.
Q: What are some common misconceptions about this disease?
A: A lot of people think MS is muscular dystrophy (MD). MD is a more well-known disease and a larger number of people are educated on MD, in comparison with MS.
Also, people don't realize the extent and severity of the disease, because it isn't necessarily physically represented, unless you are in a wheel chair.
Q: Approximately how many people in the Mankato, MN area are diagnosed/ affected with MS?
A: (In a population 34,970 people:) There are approximately 300 diagnosed cases.
Q: Why should a doctor/researcher know about evolution?
A: It may potentially help people to understand how this disease has evolved in the past and, thus, how to treat it, both now and in the future.
Q: How important is the search for a cure? And why?
A: It is extremely important, because not only will it help a huge number of people in curing this disease, but would allow them and all of their families to lead normal lives. It would allow these people to become employed and lower the amount of disability being drawn and, thus, decrease taxes. Since MS is directly correlated with depression, like most diseases, suicide rates would decrease as well.
Q:What is your opinion on using grid computing for MS?
A: It seems like a positive development.
MS and the General Public:
Q:What is the responsiveness of the general public to multiple sclerosis?
A: There is a general misunderstanding due to the lack of knowledge of MS.
Q: Why should common society be concerned with this disease and with the support of MS research/ funding?
A: Because MS is turning into an epidemic. There is an increasing number of cases every year.
Q:What can the average person do to improve research and funding for this disease, both locally and on the national level?
A: They can learn about the disease and increase awareness. People can support the MS Society through financial donations, volunteering their time, or participating in MS events. Education is the biggest tool for improving, both, the research and funding for MS.
Q: How has support/funding for MS changed within the last decade?
A: More people have become involved due to the increasing number of cases and families affected, which has led to a larger amount of donations.
Q:What issues/limitations do MS patients face regarding government programs/policies? (I.e. disability, NIH funding, etc.)
A: Disability is a big issue. It is extremely difficult for MS patients to receive disability because of the range in symptoms of MS and the, overall, lack of knowledge about the disease.
Q: Aside from a cure, in your opinion, what are two major areas pertaining to MS that deserve immediate attention? And what actions should be taken?
A: First, the issue of receiving disability. There needs to be more education and a broader understanding, concerning MS. There also needs to be a shift in the distribution of funds.
Secondly, amenities for handicapped people need to be improved. Too many of them do not meet code and make life difficult for people with MS and other debilitating diseases.
Q: What is the one thing you would like people to know about MS and those affected by this condition?
A: "That even if our brains aren’t working correctly, we are still here." People with MS are still "normal" human beings and deserve respect and patience.
1 comment:
Excellent interview! Now it's time to move on to the next phase of the project. Under "Service Learning" on the WebCT page you will find an article (and soon, some questions about it) concerning stem cells and MS. This information is only accessible to the members of your group. Your next blog entry will consist of answers to these questions.
Dr. Walker
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