Post by Sarcoidawareness on May 17, 2005 9:55:38 GMT -5
Chat transcript: Model lives with chronic disease
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 1-800-Fight-MS, and they have a book that specially speaks about MS.
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 1-800-Fight-MS, and they have a book that specially speaks about MS.
