Making a Difference
It is very fitting that the first honorees of this award are Meaghan and Joseph Carpenter, a father/daughter duo, who are staunch CSS/vasculitis advocates both together and individually.
Receiving a diagnosis of CSS can be devastating for anyone. It's even more devastating when the patient is your child and the disease is so rare. However, when Joseph Carpenter learned that his 15 year old daughter Meaghan had the disease in 2008, he set it upon himself to learn all he could about the disease and its treatment so that she would not only survive, but lead a happy, productive life. Both he and Meaghan soon became experts in how CSS affected Meaghan and which treatments were most effective at keeping the disease at bay. In addition to these research efforts about CSS, Meaghan and her dad have attended many of Vasculitis Foundation symposiums and have learned about cutting edge treatment firsthand from the world's experts. The VF asserts "Knowledge is Power" and that certainly is the case with such a rare disease, especially a systemic disease which presents so differently from person to person.
Joseph and Meaghan have aways helped to organize and provide special opportunities for CSSers to get together at these VF Symposiums. They carefully researched Long Beach restaurants which might provide a fun and cost effective opportunity for a CSS specific dinner. They organized a dinner at George's Greek Cafe, a local Long Beach institution, where everyone had a wonderful time and which set the stage for the camaraderie to follow.
The Long Beach Symposium was a wonderful opportunity for young vasculitis patients to meet and realize they were not alone in dealing with these strange unwanted diseases. Meaghan was very much a part of this happy group of participants:
In addition, Joseph has been a key supporter of the Vasculitis Foundation. He founded a New Mexico VF chapter to offer local support to patients and family members with any form of vasculitis He created an excellent website, which keeps readers up to date on VF events as well as offers practical advice and links to resources for patients. When the Vasculitis Foundation announced that they were planning to convert smaller "chapters" to "area contacts" Joseph wrote "…. I got on board right away. I figure it will not change too much what I am already doing to forward the missions of the Vasculitis Foundation, and I am and will remain, available to any of you should you need additional information." Joseph has been involved in many aspect of the new VF website and has plans for new innovative ideas in the future, such as setting up skype meetings with some of our well known vasculitis researchers.
One of the most poignant sentiments I've ever read is on Joseph's website: I am faced with the imminent death of my daughter, Meaghan.
The following sentences show the pain, thoughtfulness, love and the immense respect he has for his daughter: "She might die on Friday when she gets her first infusion of Rituximab. Death is one of the known side effects. No kidding. It is rare, but it puts me in mind of serious thoughts."
What is a "normal" symptom when anything and everything might or might not mean something in relation to the vasculitis? Plus, when the question: "What does it mean doctor?" is met with --- Silence --- because the doctors are also trying to figure this stuff out. Talk about jumping at shadows! Chronic illness is really very complex.
Meaghan has to deal with this condition largely herself, but never alone. Like every other life skill, managing her condition is something only she can do well. As her parent I am always there, but I also encourage her to take the lead as much as she can to prepare for the someday when I am not there to help her.
She is learning that if you stick around long enough you get to learn how to discern the significant symptoms from the non-remarkable ones after some gaining experience on the roller coaster ride to vasculitis hell. And there is much good and bad advice alone the way, even from the initiated.
... In spite of the vasculitis, she is living well."
Meaghan seems to be dealing with her illness extremely well. There are times when she is in extreme pain from sinusitis, stomach pain, and neuropathy, but she gets treatment as soon as possible and carries on. She's been to France. She's a humorous and compassionate poster on the CSSISG message Board under the screen name Nutmeg_0317
She has made some YouTube videos to explain the disease to other young people. This initiative has been so important to show younger patients AND their family members first hand that life does goes on after a diagnosis of CSS.
Meaghan currently studies English Language and Literature at the University of New Mexico in Albuquerque.
One post on Meaghan's Facebook page shows her terrific sense of humor and resiliency:
Mua hah hah ha hahh!!! My Vasculitis is flaring, my rheumatologist is ignoring me, and my life has been mostly miserable for three weeks now. So I am solving this problem the best way I can: Black Magic! This is Eo, my plushie Eosinophil, which is the type of white blood cell that causes CSS Vasculitis. Also in the photo is every free safety pin I have. Now, he is a voodoo doll!!!! I still feel like crap, but stabbing the thing is amazingly cathartic.
Joseph and Meaghan are extraordinary people whose activism has made a difference in the lives of others with these diseases. In addition, their love and respect for each other in the midst of adversity shines through and is a model for us all.