Hi Everyone,

 

My name is Alyssa Vanderbeek, and I am a Junior at Holliston High School.  When I was 13, I was diagnosed with psoriatic arthritis, which is an autoimmune type of disease like juvenile rheumatoid arthritis, just a little different in the part of the joints that it affects.  The symptoms are joint inflammation and fatigue, among others.  Flare ups of my arthritis can be caused by not getting enough sleep, exerting myself in physical activities that aggravate the joints, and viruses as simple as a common cold. 

 

 

 

 

When I had my first acute flare-up, I had been dancing for ten years, since I was three.  I was training at the Dancing Arts Center here in Holliston, and it was my whole life outside of school.  I dreamed of being a professional dancer, and had never thought of becoming anything else.  It was devastating.  The pain of the arthritis was terrible, and the pain of the emotional loss of being just a “normal” kid and especially the possibility that I would never dance again were even worse.  I have a great team of doctors at Childrens Hospital who have helped me with lots of potent medications to get to a point where I can participate in most normal activities.  They have taught me ways to manage my condition so that it impacts my life as little as possible.

 

But it is hard to be different.  I am 16, and wish that I could just worry about the things most kids my age worry about – school, college, my driver’s license, my boyfriend, my hair.  Of course I am a teenager, and think about all those things.  But I also have to worry about getting enough sleep so that the fatigue does not affect my school work, about how long my friends and I plan to be at the mall so that I don’t feel terrible the next day, when to squeeze in my doctor appointments and my physical therapy, whether the cold I am getting is going to cause a big flare.  I would like to someday dance again without pain.  I would like to not have to take medications that require getting a shot every week.  I would like to not worry that college will be harder for me than for other kids. 

 

I am one of the luckier ones – my mom jumped right on the problem as soon as it started, and I started treatment before any damage to my joints occurred.  But I have met a little girl, only ten years old, with the same illness as I have, who is looking at a number of surgeries when she is done growing.  She and I get together once in a while, and she looks up to me.  I feel good about this, about giving her hope, but I want to do more.

 

As a member of the Holliston High School’s National Honors Society, I chose as my leadership project to head up a team for the Metrowest Arthritis Walk, which takes place in Natick this coming Sunday, May 15^th.  My team is simply called Holliston High School.  You see, I don’t like to draw attention to myself or my arthritis.  But I can’t help but think of younger kids, like my little friend, Sarah, who are dealing with this too.  There are thousands of us – one out of 300 kids has some kind of arthritis.

 

I know this is a little late in coming, but I have been so busy with SATs and prom and driving lessons.  I am writing this now to ask the community of Holliston to support our HHS NHS team, whether it is by joining our team for the walk, making a donation, or being a sponsor in some way.  I dream of a time when there will be a cure for this disease, but in the meantime hope that my efforts will help educate people and provide resources to advocate for more research and medical options for kids like me and Sarah.

 

I would especially love to have any interested businesses in town sponsor our walk in any way that they feel able.

 

Please contact me for further information at vanderbeeka@comcast.net, or visit my team page for more information: http://metrowestarthritiswalk.kintera.org/faf/search/searchTeamPart.asp?ievent=424407&lis=0&kntae424407=043FFE05F8864C1CAB302F0528C48A9E&supId=0&team=4087761&cj=Y

 

Thank you for your support.

 

Alyssa Vanderbeek