May 27, 1999
Web posted at: 3:36 p.m. EDT (1936 GMT)
(CNN) -- The following is an edited, abridged transcript of a chat with Karen Duffy and Dr. Hester Sonder held on Friday, May 21, 1999. Actress/model Karen Duffy discusses her battle with a debilitating disease and how it has affected her life. She is actively raising awareness about women's health-care education. She was joined by Dr. Hester Sonder, a clinical instructor in obstetrics and gynecology at Temple University.
Karen Duffy: Hello.
Chat Moderator: Can you tell us a little bit about the health battle you have been through?
Karen Duffy: I've been in medical limbo for approximately three years dealing with sarcoidosis of the central nervous system. It's been an incredible odyssey to make the journey from a vibrantly healthy person to someone with a chronic illness. In a way, I tried to mourn for the person that I was and figure out who I am now.
Chat Participant: How did you find out that you had this disease?
Karen Duffy: In 1996, I got a headache that wouldn't go away, but that was kind of the easy part. After 10 months and several misdiagnoses, I was diagnosed with sarcoidosis, and I have accepted the diagnosis of sarcoidosis. A lot of people asked me if it was frustrating not having a clear specific diagnosis, but I didn't mind, I just chose the most optimistic diagnosis.
Chat Participant: Are you still able to work every day?
Karen Duffy: Yes, I think one of the ways to manage an illness is I kind of try. You know, there are good days and bad days. I try to manage my time to conserve energy. In a way, I have simplified my life by setting priorities.
Chat Moderator: Tell us about your women's health campaign.
Karen Duffy: "A New Age" health campaign is a two-year educational campaign with its goals to educate women about specific health issues they may face throughout their life span focusing on contraception, fertility, depression, menopause and osteoporosis. We've just launched a campaign Web site,www.organonwomenshealth.com, and this is a site where people can get educational information on these specific topics and ask me questions about healthy lifestyle. In addition, I'll be attending women's health expos and medical conferences with the goal to promote dialogue between women and their health-care providers. I'm presently writing tip sheets that will be available through the Web site, topics such as "How to Stay in the Hospital," "How to be an Educated Patient" and "How to Find a Style" for your illness so you don't fall out of love with yourself. I just got back this week from ACOG, American College of Obstetricians and Gynecologists, where I spoke to doctors firsthand about the importance of these issues facing women.
Chat Participant: How debilitating is this disease? Is it something you can deal with day to day, or does it completely restrict the way you live?
Karen Duffy: Everyone who has sarcoidosis is affected differently. One of the symbols in the sarcoidosis support community is the snowflake, because every case is different. In my situation, it can be best described as relapsing-progressive. To put it in simpler terms, I feel like the scarecrow in "The Wizard of Oz," and when the sarcoidosis hits me it's like the mean monkeys who pull out all of the hay of the scarecrow. Sometimes I look at the sarcoidosis as a mean monkey on my back. My friend had a funny remark; he told me everybody has something -- some people have a big butt, some people are insecure and at least you know what it is, even if it's a lump on your head. I know I have a lump on my head.
Chat Participant: Has your family been successful in helping you cope with this illness? Could friends and family have done things differently to help you cope with this?
Karen Duffy: My family has been amazing, and they understand how blessed I am. They've been able to keep my sense of humor. They still tease me. My sister made a little joke book about chronic illnesses.
Chat Participant: Do you believe being someone of "fame" has helped doctors to be more sympathetic to your needs and not to consider it as "in your head" as so many doctors tend to act?
Karen Duffy: My doctors had no idea. They are a very cool group of people, but they weren't big fans of MTV. I believe my experience as a certified recreational therapist assisted me in demanding the best possible care from my doctors. I went to my doctors with a notebook of questions so I wouldn't forget. I did as much research as I could and I took ownership of this illness, because if you don't take care of your body, where are you going to live?
Chat Participant: Hello. I've watched your career for some time now, ever since your MTV days. I just want to commend you on your courage and determination, and your really great spirit.
Chat Participant: Is this something that affects women exclusively?
Karen Duffy: No, sarcoidosis doesn't target a specific gender or race, although it's slightly more common in women, as I understand. It is considered a disease of unknown origin. And it's my hope that in some small way I can educate patients and doctors, raise awareness, find out what causes this disease and most importantly, find a cure.
Chat Participant: My sister was just diagnosed with multiple sclerosis, which has devastated her. One reason is that she really wanted kids, but now it is not a good idea. Was that an issue for you, and if so, how did you deal with it?
Dr. Hester Sonder: There are many young women in the prime of their reproductive careers who are stricken with the diagnosis of MS. Now as Duff described previously, MS, like sarcoidosis, is a condition that waxes and wanes, so that it is not always at the same level of severity. There are times when patients will go into a state of remission during which they feel relatively well and you know are perfectly capable of carrying on all of their normal activities and responsibilities. And I, as an OB/GYN, have been asked multiple times my opinion about whether or not a young woman with MS should become pregnant. My feeling is that since we do not believe this is a genetic inherited condition, that if a young woman desires pregnancy, that there is no reason she shouldn't become pregnant if she is able to. One of the things about MS, unlike sarcoidosis, is that there are many new medications that have become available in the last 12 to 18 months to retard the progression of symptoms in patients with MS, so that if a patient with MS becomes pregnant and has a baby, in many cases she is perfectly capable of caring for the infant and then the child.
Karen Duffy: I just had that conversation this morning with my doctor. I just got back from the hospital a half-hour ago, and nothing will make me happier than to replicate the DNA of my amazing husband. Im optimistic. For the individual's sister who had MS, the National MS Society is an amazing resource center, and the number is , and they have a book that specially speaks about MS.
Chat Participant: Do you find it harder to acquire acting jobs now that people know you have an illness? Are they reluctant to hire you?
Karen Duffy: Very good question. In the beginning, when I first found out I had a disease that was incurable, emotionally I had to get used to the idea of being sick before I could think about making any other major decisions in my life. What's interesting as an actress and a model is the focus of my career was on my face and my body, and the visibility of my symptoms were strikingly real, so I had to adjust to my new way of living. I didnt disclose my illness right away. A film company buys insurance to guarantee that the actors are healthy and can perform their job. Every time you do a movie, you have to get a physical. So it was a big risk by disclosing my illness, but I felt it was the height of hypocrisy if I lied about it given the fact that I was such a passionate believer in the Americans with Disabilities Act and the idea of mainstreaming. Concealing an illness is like keeping a beach ball under water. What you should know is that legally you are not required to reveal your health information. On an optimistic note, I'd like to (praise) Revlon for keeping me on as a spokesmodel. Revlon has donated nearly $27 million toward research for breast cancer. I admire the fact that when one of their models got sick, they kept me on, when I was fully prepared for getting sacked. I didn't think there would be a run for bald-headed, steroid-bloated models. Almay is the No. 1 fastest-selling cosmetic brand in the world; it's a gold figure!
Chat Participant: Could you explain briefly, for those of us who don't know, how your disease affects you?
Karen Duffy: I have a lesion in my spinal cord and in my brain approximately the size of a pencil. The lesion is in the area of my brain that is responsible for motor function, so I have continual chronic pain in my left arm from elbow to fingertips and the right side of my body from my ear to my breast area. I don't have feeling in my feet to my fingertips; I also have active lesions in my bone marrow and in my eyes. With sarcoidosis, in simple terms, sarcoid comes from the Latin, which means inflammation of the skin. Sarcoid can attack anywhere in the body where there is soft tissue, and these cells become like sand. The lesions form hard crystals. It's three times more common than TB, and most people have activity in their lungs, but mine began in my brain.
Chat Participant: This sounds exactly like MS. How are the two conditions distinguished from each other?
Dr. Hester Sonder: MS is a disease that involves a progressive loss of a substance called myelin that surrounds the nerve fibers. This loss of myelin occurs in many different parts of the central nervous system, and therefore it can occur in the brain or it can occur in the spinal cord or in the peripheral nerves that supply the arms and legs. The symptoms are in many ways similar to those of the sarcoidosis of the brain. Now sarcoidosis, on the other hand, involves usually certain organs in the body more commonly than other organs, and it's my understanding that the central nervous system involvement is one of the rarest places to find sarcoidosis. It much more commonly involves the lungs, the liver, and I guess other soft tissue areas, perhaps the spleen and the bone marrow. But the good thing about sarcoidosis is that it can stabilize and go into a state of remission for an indefinite period of time, so that many patients with sarcoidosis will have a normal life span, although they may have to deal periodically with symptoms and problems associated with sarcoidosis. Unfortunately, MS is a steadily progressive disease and almost inevitably results in a premature demise or death of the victim.
Chat Participant: There is a side of you that we, the public see ... the outgoing, lively side. How difficult is it for you to keep that beautiful smile of yours despite the pain? And are you working on any projects now that we can look forward to?
Karen Duffy: Very nice question. I'm flattered and honored. I take a lot of drugs; I am the patient of a fearless pharmacologist. I still when I wake up hit the ground running; and having an illness, I'm only one of hundreds of thousands of people that live with an illness, and I'm just in awe of the bravery and dignity of the people I see at the hospital. I am enormously honored to be one of the spokesmen of the New Age Womens Health Campaign, so you'll be seeing me in public service announcements and public appearances supporting the campaign. I'm still working with Revlon and got a couple of movies in the can, and Im working on two television shows as we speak. The campaign is actually called "A New Age in Womens Health Care."
Chat Participant: Any final thoughts?
Karen Duffy: It was a lot of fun to participate in this Web chat, and I look forward to exploring this medium more thoroughly through the campaign Web site, and again that's www.organonwomenshealth.com. I never expected in a million years that I would have the honor to become an advocate of women's health care and education, and I'd dive on a live grenade to get this message out, so thank you for this forum. God bless you all, and check in with me at the Web site. Goodbye!
Dr. Hester Sonder: I just want to thank everybody for including me in this very exciting discussion and hope that whatever information I provided was of help to someone. Thanks very much.
Chat Moderator: Thank you, Duff, and Dr. Sonder, for joining us today.
Former MTV VJ tells of battle with chronic illness
By Kat Carney
CNN Headline News
Friday, September 19, 2003 Posted: 2128 GMT ( 5:28 AM HKT)
(CNN) -- In the mid-1990's, model and former MTV VJ Karen Duffy, aka Duff, was one of Hollywood's rising stars.
|Karen Duffy "[Sarcoidosis] is not a gift |
that I would have picked out for myself.
But now that I have it ....
it's made me braver."
I spoke with her about the first time she started having symptoms.
"I had this really bad headache," Duffy remembers. "And I started taking aspirins, and then I realized, this headache is really something that I've never experienced before."
That was in 1995, and Duffy was in Los Angeles, California, for the Emmy Awards. She says she managed to make it through the ceremony despite the intense pain in her head, but it wasn't easy.
Duffy described her headaches as, "A burning, sharp pain that felt like I was being electrocuted, and it wasn't consistent. It was a dull ache. It would be every 30 to 45 seconds."
Suspecting something was seriously wrong, she flew home to New York the next morning.
"[I went] right off the plane [and] right to my doctor's office," Duffy said. "When he saw me and saw the level of pain that I was in. He said, 'I'm going to call right now and send you over to get a series of MRIs.' My life as a healthy person pretty much ended and my whole new life began, which is having to deal with a chronic illness."
After a series of tests, Duffy said, her doctors narrowed the list of possible problems to multiple sclerosis, ALS, AIDS, non-Hodgkin's lymphoma and sarcoidosis.
After excluding the first four, Duffy said, her doctors concluded that she had a rare form of sarcoidosis.
Generally speaking, sarcoidosis is a chronic inflammatory disease with symptoms ranging from lung and eye problems to arthritis.
For Duffy, sarcoidosis meant intense, chronic pain throughout her body, as well as other problems.
"I was losing balance; my gait was off. I lost feeling in my hands and in my feet. It was really a lot of the things I thought were going to pass."
But they didn't pass, and Duffy says she underwent numerous treatments, including steroid doses and chemotherapy, to manage the disease.
"Most important was the pain medication. If I didn't have this, I would be curled up in a ball. It was just so overwhelmingly painful."
But despite the pain, Duffy refused to feel sorry for herself.
"If I was going to have to live with a chronic illness, I didn't want to be bitter. And if I got better I didn't want to feel like 'why me?'"
In 2000, Duffy detailed her experience with sarcoidosis in The New York Times bestseller "Model Patient: My Life as an Incurable Wise-Ass."
Her portrait also appears in the "Many Faces of Pain" exhibition sponsored by a manufacturer of pain medication.
"Sarcoidosis isn't some burden that I carry. It's not a gift that I would have picked out for myself," she said. "But now that I have it, it's made me actually stronger. It's made me braver."