October 2006 Readers Digest - Misdiagnosed -- Mystery Diseases and Syndromes: Losing Control

On Sept 18 and 23, 2007, The National Geographic Channel aired a program called the Science of Obesity. Cushing's was the main subject for about 5 minutes of the video! The Cushing's segment featured Dr. Ted Friedman from Charles Drew University in Los Angeles, CA ( goodhormonehealth.com) and his patient, Kate. Thank you Dr. Friedman and Kate!!
You can view the 5 minute video Click here

My experiences with this life altering illness have led me to promote Cushing’s Awareness wherever I go. I always wear a blue and yellow ribbon for people to ask about and talk to everyone I have a chance to about Cushing’s in hopes that someone will be diagnosed earlier.

After the birth of my daughter in 1998, I knew something was not right. So I looked for answers from many medical professionals. Finally, I was diagnosed with Cushing’s Disease. I had many procedures and tests, but my pituitary tumor could not be seen on any MRI’s (13 to date). My adrenal glands were eventually removed to save my life. Two and a half years later I had my son. Through all of this I asked lots of questions and became educated about Cushing’s. Having been an elementary school teacher, I knew that I must pass on this acquired knowledge.

It was actually by chance that I participated in my first exhibit. I was reading the local Thursday newspaper and saw a notice for a Women’s Symposium on Saturday in my home town in Virginia. It advertised over 50 local exhibitors like cancer information, nutritionists, diabetes association, sickle cell foundation, free blood pressure checks… all sponsored by local businesses and organizations. I wondered if any of these women had even heard about Cushing’s. I remembered seeing the booths from CSRF and CUSH at the Pituitary Days Convention, UVA. Could I do something like that? I telephoned and asked. They said yes!  

I came up with a simple design. I ran out to Walmart and purchased a science 3-folding board and anything else I might need. I had three things on it: a picture with the symptoms listed; my story and pictures; and brochures from the organizations. I mounted it on poster board then glued it all together. I then sat down and made my own one page flyer using ideas from the web sites and Xeroxed 150 copies to hand out. My flyer contained the symptoms list with the outline drawing, my thoughts and story and a list of the different organizations and web sites for more information.  

Saturday morning I set up my exhibit using a folding table, table cloth, silk flowers, my 3-fold board, my past newsletters in sleeves, yellow & blue ribbons on safety pins to promote Cushing’s Awareness Day, (more about that later) some business cards and a dish of mints. I then took a deep breath and jumped in with both feet! It was great! I met lots of people and talked about Cushing’s all day. I can’t help but wonder if I helped to save someone’s life. I would definitely do this again!

You, too, can become an advocate for Cushing’s Awareness. These health or women’s symposiums are held all over the country. What a great way to get the word out! There are many other ways as well. All it takes is an idea. Write a letter to a medical professional. Tell them your story and remind them about the symptoms of Cushing’s. Write to every doctor who dismissed your symptoms as something else. Do a power point presentation to a group of nursing students. Ask to be a guest speaker at Weight Watchers or TOPS meeting. Put up a flyer in a fitness center. Call your newspaper to write a story about your “rare” illness.  My story has been published twice in my local paper.

You can read these articles at: First local paper article, 2004 http://fredericksburg.com/News/FLS/2004/032004/03092004/1287556/printer_friendly Second local paper article, 2005 http://www.fredericksburg.com/News/FLS/2005/042005/04032005/1714998

I am also actively working on getting April 8, Dr. Harvey Cushing’s birthday, established as a National Cushing’s Awareness Day. In the near future, I’ll be asking for your help on that as well. Anything is possible if we all participate!

Jayne Kerns, Fredericksburg, VA