How I raise Awareness for Churg Strauss Syndrome

by Lynn Corwin, November 2009

When I was first diagnosed with CSS in July 2008 (after being sick for more than two years), almost no one, including most medical personnel, had ever heard of CSS. Several medical doctors never heard of it, and the ones that heard of it had no CSS patients. Only the rheumatologist who finally diagnosed me after four in-hospital stays knew what it was.

Once I got my strength back and started with a good Cleveland Clinic CSS rheumatologist and a management program of Prednisone Methotrexate and 15 other medications, I decided to make it my business to educate people about CSS. Yes, it is an extremely rare disease, but since it is the disease I will live with for the rest of my life, I felt people needed to know about it.

So….in my (rather spacious) purse I carry (1) several VF CSS “disease cards” (the ones that explain the disease in a brief, concise fashion), (2) my personal cards with my name, phone number, and email address, and (3) several CSSA brochures. I also carry (4) Vasculitis Foundation cards and brochures so that I can explain vasculitis in general. Now that I am the Vasculitis Foundation Chapter Leader in the Cleveland-Akron OH area, I also carry (5) flyers to be put up everywhere asking for vasculitis patients to contact me about our new local support group. I can’t go out and find CSS patients, so I have to “advertise”, hoping they will come to me.

Here is a miniaturized version of what my 8½ x 11 flyer looks like:
_____________________________________________________________

Attention: Vasculitis Patients

The Vasculitis Foundation has formed a local chapter in the Cleveland-Akron area. Our aim is to provide emotional support to patients with any form of vasculitis and their families through our local group and educational materials. We are a nonprofit organization. At your request, we would be happy to send you a copy of our bimonthly newsletter and add you to our mailing list.

The Foundation maintains a website that can be accessed as follows:

www.VasculitisFoundation.org

The email address is vf@vasculitisfoundation.org

For more information please contact:
Lynn Corwin
Cleveland-Akron Chapter Leader
Vasculitis Foundation

phone 216-570-1076
email annabelle3@hotmail.com
______________________________________________________________

I talk to people everywhere I go. Certainly all my friends and acquaintances have heard my “CSS story”, and I pass out the cards and flyers with a short explanation to everyone I see; and that includes people waiting in line in the grocery store, the proprietor of every store I visit, any party, gathering, or social event…you get the idea. I start by asking them if they ever heard of CSS. Of course, they say no. Then I whip out a CSS card (with my personal card stapled to it), tell them that this is the disease I have, and give the card to them with a 30 second explanation (any longer and they lose interest). I also give them a flyer and ask them to do their good deed for the day and post it in a medical office, physical therapy office, dental office, etc. I also tell them if they ever meet anyone with any form of vasculitis to have them call me…no obligation…just a support group with informal meetings, speakers, door prizes, etc. I also tell people that I have available resources to help anyone with vasculitis.

I find that the people who have contacted me are very enthusiastic about a local support group. Where else would we be able to interact with others who actually know what it’s like to live with vasculitis?

In my zeal to raise awareness, I have been blessed by the kindness of strangers. Two local copy shops xeroxed hundreds of flyers and meeting handouts for free. Grocery stores give me cases of water (for meetings) for free. Some stores give me free office supplies. I just explain to them that I have CSS, head up the Cleveland-Akron Chapter of the Vasculitis Foundation, and how important awareness is for all vasculitic diseases, (and wouldn’t they feel good to be a part of something so important) and they give me almost anything I ask for. This is how I get most of the very nice door prizes. All you have to do is ask. If they say no (as Kohl’s and Office Max did), so what? (Of course, I let them know that I’m awaiting disability and my husband is laid off…otherwise I would pay for the things myself.) I also let them know that my (nonprofit) Vasculitis Foundation budget is zero.

I plan to keep talking about CSS until the disease is a recognizable word like diabetes or cancer.

I have been on television and in several newspapers talking about vasculitis in general, and CSS in particular. I recently taped a public service announcement about my CSS and our local support group

Through my efforts to spread the word about CSS, I believe thousands of people worldwide now know about the disease, and hopefully they will spread the word. I had occasion recently to visit a friend in the emergency room of a large local hospital. The emergency room doctor nor any of the nurses ever heard of CSS. Well, they know about it now!

Lynn Corwin
Cleveland-Akron Chapter Leader

Vasculitis Foundation
Churg Strauss Syndrome Association Board of Directors

phone 216-570-1076
email annabelle3@hotmail.com