There is no one better to discuss the impact of juvenile arthritis than my friend Margo Deihl. She is an amazing high school senior. Although she has already had to live with the pain of arthritis for many years, she has not let it stop her from excelling in many ways.
I've asked Margo a few questions about her life with arthritis and her efforts to fight the disease. She was very open with her answers to make this a very interesting and informative interview.
Many people don't realize kids are affected by arthritis. How big is juvenile arthritis?
Juvenile arthritis is so much larger than the average person would think. Arthritis in general affects 50 million Americans, which is about 1 in 5 people. Out of this group, approximately 300,000 arthritis patients are children! I believe that a very important part of advocacy with the National Arthritis Foundation is showing the legislators that this is more than an “old-person disease,” but affects the future of America. I think this misconception accounts for the fact that it took fourteen doctors to diagnose me with an overlap of scleroderma and Juvenile Rheumatoid Arthritis (JRA). Juvenile arthritis is definitely not the first thought that comes to mind when an eight year old girl’s hand is swollen and in pain!
I understand you have suffered from arthritis since a very young age. What was life like then and how were you able to cope?
I started showing symptoms of arthritis at age 8 and was diagnosed at age 9. Before being diagnosed with arthritis, I like to think of myself as a “champion” of the monkey bars in elementary school and I was even involved in gymnastics. I started playing the piano at age 3 and violin at age 5. What had been easy and fun tasks soon became very difficult, as I ran the mile for school one day and could not walk the next day.
I soon realized through involvement with the Arthritis Foundation that I needed to look beyond my disability and see my capabilities as a young girl as well as an aspiring musician. If I had given up the fight against my arthritis at a young age, I know I would not be where I am today! Through many prayers and the help of many medications, I have been able to cope very well with my arthritis!
How has your life with arthritis changed over the years since then?
I have been doing very well and am improving so much. I used to take 64 pills each week and now am taking less than 20 per week! I still go to hand therapy and have routine blood work done as well as routine doctor visits. I continue to play my instruments and am about to enter college!
I will be attending James Madison University (JMU) as a biology major and music minor. I have the goal to become a pediatric doctor and I know that I will be able to use my struggles with arthritis to relate to my young patients. I believe that arthritis will help me become a better professional in the field of medicine since I will so easily be able to relate to the children in my care.
Although I still have many rough days in between all of the good ones, I have come such a long way and I am so thankful that the Arthritis Foundation has been behind me and my family every step of the way!
You are a dedicated advocate and volunteer with the Arthritis Foundation. Why do you consider it important to support the Arthritis Foundation?
The Arthritis Foundation is the leading organization dedicated to the health and wellness of arthritis patients in the United States. The Arthritis Foundation gave my family information and direction after I was diagnosed and continually opens up opportunities to get involved in various fundraising activities.
It is so important to give back because of the hope that the Arthritis Foundation gave to my family when we were completely lost. I came to a turning point when I recognized that the big family known as the Arthritis Foundation needed help too, not just me and my family. I consider it a blessing and honor to be able to affiliate myself with such a caring organization that is truly there for every arthritis patient seeking direction and the comfort of knowing that you are not in this fight alone!
What are some of the ways you have been able to support the Arthritis Foundation and the cause to fight arthritis?
One can always find ways to get involved with the Arthritis Foundation. I have been an Arthritis Walk team captain for many years now and that fundraiser truly helps to get your community on-board with funding new arthritis research! I have been able to get my classmates at my school involved as well as neighbors, friends, church, and family. I have also visited Capitol Hill three times advocating for the cause, where I spoke directly to my Congressmen and their legislative staff. That way, my legislators can hear my personal story and put a new face to the disease and know that when they agree to support the arthritis legislation, they are helping my future! I was told by my Representative that I directly influenced his decision to cosponsor the Arthritis Prevention, Control, and Cure Act. It is in moments like that that I realize that speaking out for the cause of arthritis is never in vain!
Is there something you would like to say to those who are thinking about supporting the Arthritis Foundation?
When I was first diagnosed with arthritis, my family did not know where to turn. It was the moment that my doctor showed us the Arthritis Foundation that my family was introduced to a much bigger family – The Arthritis Foundation. The Foundation immediately took us under their wing as we attended our first Juvenile Arthritis Conference the summer after my diagnosis. We have learned so much because of the Foundation and I have recognized a very important thing: I am not alone. The Foundation has offered me hope and has educated my family about the latest treatments and what we can do to make a difference for the lives of others suffering from the disease. I would say that it is such a worthy cause and is truly an investment in America’s today and America’s future.
Is there anything else you would like to say that I haven't asked you about?
Well, one mindset that I have kept throughout the process of dealing with my arthritis on a daily basis is that arthritis is a blessing. Many people suffering from the debilitating disease may question that and disagree. But over the years, I have seen so many opportunities open up for me to share my personal story with arthritis and be an inspiration to others. I know that arthritis is more than a blessing than a hindrance to my abilities because I have had so many opportunities to travel to Arthritis Foundation events that have given me the chance to share my personal story!
When you support the Arthritis Foundation, you are helping millions of people of all ages. Please go to http://www.charitywalksblog.com/arthritiswalk and join me in supporting the Arthritis Foundation in their fight against arthritis.