Cause Celeb highlights a celebrity’s work on behalf of a specific cause. This week, we speak with model, actress and television host Padma Lakshmi about her charity, the Endometriosis Foundation of America. Lakshmi herself had the painful disorder, which affects millions of women and adolescent girls in the United States.
Lakshmi joined the organization and relaunched it with Dr. Tamer Seckin in 2009. Lakshmi, host of “Top Chef” on Bravo channel, uses her celebrity to bring awareness to the disease and its symptoms. Endometriosis is an often painful disorder in which tissue that normally lines the inside of the uterus grows outside the uterus.On March 18, the Endometriosis Foundation of America hosted its third annual Blossom Ball to raise funds to combat the debilitating condition. To find out more information about endometriosis and future events, you can visit www.endofound.org.
Interviewed by Ezra Dreiblatt
Q: Can you tell us a little bit about the Endometriosis Foundation of America and its mission?
Lakshmi: The Endometriosis Foundation of America is a nonprofit that seeks to help women get treatment for endometriosis. It also promotes research in gynepathology, and tries to get the word out about this disease. It’s a disease that affects one in 10 women, and it is also a disease that affects 176 million women every year. It’s not curable, but it is totally treatable and manageable with early diagnosis and regular check-ups. Only your gynecologist can you tell you if you have it by doing a pelvic exam, and in some cases, biopsies or through cultures or testing for it. A lot of women just go untreated, or undiagnosed, or misdiagnosed.
Endometriosis is when the uterine lining does not get dispelled every month from the body with the woman’s period, as is the case in a normal functioning woman. So that’s when you get all these other symptoms like cramps, headache, backache and digestive problems. It’s also one of the leading causes of infertility in women, and that was one reason we were galvanized to do something about it. Many women in our generation are working, and are deferring motherhood, or just for whatever reason, having children later. If you’ve never explored the possibility of having a child until your late 30s or even early 40s, you may be waiting to late.
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Some people who have endometriosis don’t have symptoms, and it’s not until they begin to explore their own fertility that they find out that they’ve had this problem. It’s [endometriosis] often at a very late stage, and the problem is much more advanced than it would have been if early detection had taken place.
Q: What prompted you and Dr. Tamer Seckin to found the organization?
Lakshmi: Dr. Seckin and a couple of our other board members had an organization before I came to them. I joined, and we kind of re-launched the foundation. I just want to respect the people who’ve been involved in it, so that’s why I make the slight correction. We really launched it in April of 2009, and I was just really galvanized to do something about this cause because I had never heard of it.
I had had five operations, and the first two I was misdiagnosed. I had access to the best medical care in this country; I had screen actor’s guild insurance. My surgeries were at Mount Sinai and at Cedar Sinai, and I have no doubt that the doctor’s who treated me had every intention of giving me the best care possible. They just were not knowledgeable enough, because it wasn’t at the forefront of their minds.
You know, when you’re in medical school, there is like one minor fleeting reference to endometriosis, and it’s not really covered. It should be covered for any doctor working in the body cavity, because endometriosis is something that spreads, and it can cause all kinds of digestive problems, problems in the liver, problems in the spleen, and problems in the kidneys. If you don’t know what you’re looking for, you can often misdiagnose it just as some scar tissue or overproduction of certain kinds of other tissue. It just gets misdiagnosed.
I didn’t know how much pain I was in until I wasn’t in pain anymore. I used to be bedridden for four or five days, sometime with a heating pad, every month. I would miss work and family engagements. My hormones were crazy. I had backache, lower backache, headache and bloating. Everyone just thought that I had really bad periods, but this was much more than a really bad period. When you're told by the women in your family, “Oh yeah, I had really bad periods too, you’ll probably have it,” you just think, this is my lot in life. You know, pain is your body’s way of telling you that something is wrong.
Q: Friday, March 18th, you’re co-hosting the third annual Blossom Ball. What do you hope this event will achieve?
Lakshmi: For starters, I hope that it raises some much needed money to do our campaign. Last year we were able to launch the first research center for gynepathology at MIT. This year, we are going to have some exciting announcements too.
First of all, I’d like it to raise money. Second of all, and equally as important, I’d like to raise awareness. It’s never pleasant talking about such a personal issue, whether it’s up in a room where everyone is all dressed up in evening gowns at the public library, or on the phone with a journalist like you. I really thought that it was important because I have nieces, and now I have a daughter, and I didn’t want them to go through what I went through. I should have been diagnosed at 23, not at 36.
I just thought about all the months that I could have been prevented pain, and just being left out of my own life because of this chronic pain that I always had. I didn’t want other young girls to go through it. I thought, if I open my mouth, and some woman, or some young teenager, or some college student somewhere in the country is reading about it, or sees me on TV or something, maybe they recognize the symptoms. Then maybe they’ll ask their mom or their teacher for help, or they’ll go to see a specialist, and they’ll go get treatment, and they won’t have to wait until they’re all of 40.
Q: Have you had any memorable experiences while working with the Endometriosis Foundation of America?
Lakshmi: I think giving the keynote address at MIT when we launched the center was the highlight for me. I was a theater student, who then became a model, who then became a host of a cooking show and an author of cookbooks. So, never in my life did I think that I would stand at a podium at MIT, let alone in one of their classrooms. So that was a big coup for me.
But also, the bigger deal was just all the mail that we’ve gotten to the foundation’s website, and listening to all these women’s stories. We get letters every single day. Every week, we get like 20 letters of women who say, “I have it too; I think my daughter has it, or I think my sister has it, or I think my sister’s daughter has it and thank you for opening your mouth.” Or, “where can I get treatment, or what do you suggest, or I don’t know what to do.” That’s the greatest thing for me as a patient, is to see that I’m not alone, and very thankful that I did open my mouth.
It took me a long time. I was with Dr. Seckin for four or five years because once I got to him, I had to have three more operations with him. He had been asking me to talk about this for a long time. At first, he just asked me to talk to other patients who suffered from it. He asked me repeatedly if I would do this foundation with him. It took me awhile to because I didn’t want to speak about those things either.
It’s uncomfortable, but, I just feel that the upside is worth it. I feel that if there’s anything to be gained from being misdiagnosed, or going undiagnosed, it’s to spare other young women from going through what I did. That would be the only benefit of what I went through, is to share it with other people, and use that pain and turn it into some kind of power.
Q: You’ve been so generous with your time, is there anything else you would like to add?
Lakshmi: I would just ask that you make sure you publish our website which is endofound.org, and say that if any young women have any questions about where to get treatment, or counseling, or any information, or anyone wants to help, that they go to our website and take a look.
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