Camerone Parker delivers this message with grace and gusto. Having lived a relatively normal life, she was ‘discovered’ at age 21 and has become a top Supermodel proudly represented by the famed FORD Modeling Agency. Since then her life has been anything but normal, jet-setting all over the world, walking the runway, and appearing in over 300 magazines. Camerone Parker has worked with top named designers like Bagley Mischka, Vera Wang, and Giorgio Armani, was seen nationwide on Billboards for Ralph Lauren POLO, and has been the face of Olay.
In this world of high fashion, Camerone was keeping a high stakes secret, in January of 1998 she was diagnosed with relapse-remitting Multiple Sclerosis (RRMS). Without health insurance to help with medical costs (one medication alone cost $65,000 a year) and knowing that her career was on the line, Camerone made the decision to keep her diagnosis quiet. She eventually got health insurance and in 2009 told the world about the secret she had been guarding.
Today this Supermodel turned Superhero has a mission- find a cure for MS. Camerone will tell you that even though she has a ‘common’ type of MS, no two people are alike. So, flanked by her team of medical professionals, husband, family, friends, and coach, Camerone works tirelessly to raise awareness and advocate for treatment of this disease. She is in high demand as a public speaker and is looking forward to walking the runway for New York Fashion Week this year. Through it all, Camerone Parker has never faltered—but if she did, we’d blame it on the shoes.
Shelly Rohe: Let’s start at the beginning. What it was like growing up for you?
Camerone Parker: My parents are Bill and Elise Chambers. They are amazing in the way they raised two children. I have one brother. We are a year and two days apart, and we are completely different from each other. And to have parents recognize the talents in both of their children I think was a unique blessing. I was a normal, happy, healthy, child. I went on to college, and everything in my life was kind of textbook, nothing out of the ordinary.
I was discovered as a model; and after having a discussion with my parents about that, I was off and running. I’m so blessed that I never did anything—and I still don’t do anything of ill repute, so my parents have never had to go running from embarrassment, at least so far! (laughs)
Rohe: How old were you when you first started professional modeling?
Parker: I was 23, the ripe old age of 23. (laughs)
Rohe: How were you discovered? How did that happen?
Parker: I happened to be shopping with my mother, and this gentleman kept walking around and I thought, “This is kind of creepy.” He wasn’t kind of creepy at all. He gave me his business card and he said, “Have you ever thought about modeling?” This is so embarrassing. I had just taken a swig of Diet Coke, and I sprayed it all over him when he said that! So, my Southern manners went out the door!
Rohe: (laughs) I do detect a bit of an accent. Where did you grow up?
Parker: I have Alabama roots. My dad’s part of the family is all from Alabama and my mother’s side is divided between Texas and the North Shore of Chicago. But I was raised in a real Southern family: “Yes, Ma’am.” “No, Ma’am.” “Yes, sir.” “No, sir.” All of that. I will tell you that that really sealed the deal. He realized I could be a model and talented at the same time. When I was discovered, I never really thought I was beautiful or pretty, I just knew that I was different. I truly to this day still believe I’m very unique and very different. I’m not everybody’s cup of tea, nor do I want to be everybody’s cup of tea. (laughs) I have a very edgy, avant-garde look that has gained steam as I’ve gotten older.
So, I decided to try this world out and never once looked back because the fashion world embraced me and it was because of this world that I can honestly say that I am alive today. Even though I had to keep my MS diagnosis a secret, I was able to generate the income needed to keep myself alive, and that is so important. I didn’t ask for favors or special treatment. I paid every cent of my medical treatment up until the time that I got medical insurance.
Rohe: When you were modeling and exhibiting symptoms, did you ever think anything significant was happening to you?
Parker: You know, I really didn’t give it any cause. I had some symptoms, but I didn’t think that they were symptoms. I thought it was just, “I’m tired.” “I’m on an airplane.” “Have you seen the shoes I’ve had to wear on the runway?” I had what I thought were very logical excuses, explanations of a few precursors before my diagnosis. As they would somewhat come on, they would hang on for a little while and then kind of go away. When I say that, it fits the mold of relapsing-remitting multiple sclerosis, which is what I was diagnosed with. It kind of waxes and wanes. The fighting, the numbness, the tingling, the MS hug that I would get in my chest, my horrendous vision loss, all of this was kind of adding up. But I was working so much, I didn’t give it a breath because I thought it was because I was tired. I could always justify it as, “I’m tired.” “I just got off bouncing here, there, and everywhere on planes. I need some time off, need some rest.” If I had some numbness on my left side, especially into my left leg, and I would trip or stumble, I blamed the shoes. It was also the shoes’ fault, not the model’s fault. (laughs)
Rohe: (laughs) What was different about the time you were finally diagnosed?
Parker: Unfortunately, I went through a very, very rough bout of spinal meningitis, and that’s when the neurologist who was assigned to my case in the hospital said, “I want to make sure that everything has left your body. There are a few markers that are showing up in your spinal fluid from your spinal tap, and I want to make sure that it’s not meningitis.
When my doctor called, after I did all of these tests, it was him calling, not his nurse or his medical assistant, and he said, “I need you down in my office within the next hour.” I thought, “Oh, my gosh, what did I do? Did I do something wrong? Did I have one glass of champagne too much? What?” I’m running through silly scenarios in my head, and being relatively healthy growing all the way up and then walloped with this kind of diagnosis. I think it takes the breath out of you, it really does.
I still can hear my doctor telling me that, and the wind being knocked out of me, where I couldn’t speak. First of all, I didn’t know exactly what it was, but I knew it was something serious, and of course I looked up and he said, “You’re going to have this for the rest of your life,” and that’s when I started crying. I said, “You’ve just signed my death warrant! No one will hire me knowing I have this!”
A million things flew out of my mouth, and he said, “I want you to stop and take a big breath. We’re going to go through this.” How was I going to take care of myself for the rest of my life? The unpredictability of MS.
Rohe: Could you explain a little about RRMS?
Parker: Yes. There are basically—now they’re saying there are four, but there are basically three different types off multiple sclerosis. There is relapsing-remitting, primary progressive, and secondary progressive. Those are the top three. RRMS is when you go into remission or you suffer a relapse. You never know how long your relapse will last. Will it last a day? A week? A month? A couple of months? One never knows. Having this type of MS- all the things I was encountering, the vision loss, the numbness, the fighting, the waxing and the waning, I was going into a relapse and going back out into remission.
My doctor was very keen on all of the MS studies. I was diagnosed in January of 1998, and at that time, there were three FDA-approved disease-modifying drug therapies available. I consider myself very, very lucky, because had I been diagnosed back in 1993 or prior, there were none. Today we have 17 available. I’ve seen in my lifetime living with MS the evolution of so many new drugs and drug treatments, all of which are fantastic for an MS patient, however, none of them are a cure.
In general, no two MS patients are alike. We may have common symptoms, but I can’t tell you why today I can put on lipstick and a pair of heels and be OK and why tomorrow I may not be. We don’t know. Why were the lesions attacking my optic nerves, the nerves surrounding my eyes and my vision? Why was that the primary center? Why was I losing my vision? We don’t know. Disease-modifying drugs were very important because we wanted to slow the progression of the disease. If I had maybe three relapses a year, let’s see if we can cut it to two, and then let’s see if we can cut it to one.
My doctor told me that the three drugs that were available at that time were Avonex Interferon, Betaseron, and Copaxone. We called it the ABC’s. (laughs) I was put on Avonex Interferon. I remained on that until 2013, and my life changed because I was able to go off of Interferon and go onto Tecfidera, which is a pill, and that was a game-changer for me.
Rohe: What was the first one like if it wasn’t a pill?
Parker: Avonex Interferon is an injectable, once a week. It’s an IM, so the needle is as long as I am wide. (laughs) It is very painful, and the side effect was that I had the flu every single week. How does a model travel with this medication that needs to be refrigerated? How does she travel with these humongous needles? How do I travel with all of that and not be found out?
Rohe: My questions exactly.
Parker: Well, this is part of the big ruse. I sat down with my neurologist and we mapped out a plan of every single city I would be in throughout the year. A lot of times I would be in one city for six or eight weeks. We figured out Sunday nights were always good because Mondays were typically quiet days for me. Occasionally I would have a shoot, but not many. It would be a good travel day. So, my doctor would arrange for me to have my Avonex Interferon bloodwork, everything I needed to be done, at a hospital in every city that I was in.
Parker: I would sneak out of my hotel with no one seeing. I would have a taxi or car service pick me up, typically a car service was the best because they could wait for me at the hospital. This was about 2:00 or 3:00 in the morning. I’d get to the hospital, have my treatment, then get back to the hotel without anyone seeing me. There were a couple of times I kind of got caught, and I laughed it off. Some people who knew me were coming in from a night out and they all said, “Oh, we knew you were going out, you were hittin’ it!” I kind of wanted to say, “ Yeah, I was hittin’ it, but you have no idea where I was hittin’ it at!” (laughs)
Rohe: You never told anyone?
Parker: I couldn’t tell anybody because one of my drugs, the Avonex at that time, was $65,000 a year.
Rohe: Wow! That’s a lot for one medication.
Parker: And I had no medical insurance. I was an independent contractor. Models didn’t have a union. At that time, private insurance was really hung up on preexisting conditions. If I was to spend money, I needed to spend money on keeping me alive and not paying for insurance that wasn’t going to take care of me.
One of my drugs was $65,000 a year. The secondary drug was about $1,000 a month, that added another $12,000 into that mix. Plus a yearly MRI, either a spinal tap or other things. A neurologist is a specialist, and I have to see him once or twice a year. And because I was going into the hospital to have my treatment, that was extra money. I needed every modeling job to pay for this, and I took them. Nobody could know. Let me just preface this by saying, I had no shame. There was no shame in having MS. I think it’s shameful that as an MS patient I couldn’t get medical insurance back then.
Parker: But there was no shame. I was giggin’. I had to work. I also suffered having the flu and all my side effects on an airplane, on a tour bus, in a rental car and losing a day when I had them. In 2013 I was able to switch over to Tecfidera, which is a pill I took twice a day, I didn’t have any more side effects. I didn’t lose a day to the flu, and there were no more painful shots anymore. It was a game-changer for me.
Rohe: When you were on those medications, you couldn’t take painkillers?
Parker: There are lots of things you can’t do. You can’t drink. If you do, like a sip here or there of something, and I worked too hard for that medication! You can’t take painkillers. MS is a painful disease, so I managed my pain with acupuncture, which was very, very good. You can’t be out in direct sunlight. There are lots of things that come into play. One of the consequences is something that happened to me last fall and left me once again fighting for my life.
I had just, as I love to say, tore up New York Fashion Week. I was in the New York Times and had an amazing photo shoot at the Plaza. I had so many great things. But I was not feeling well at all that whole week. I look at some of those pictures now and I think, “Oh, good Lord!” Forty-eight hours later I was in the ICU fighting for my life. Flying home, I was in medical distress and when I got off the plane, my husband met me. He had called my doctor and I was rushed to Mayo in Scottsdale and immediately put into ICU. I was in complete liver failure.
The proper term of what happened to me is hepatocellular injury to the liver, which is basically a toxic level where I killed part of my liver. Unfortunately, it was due to my MS medication. Would I still advocate for anybody out there who is newly diagnosed. You get on a drug therapy program. You want to make sure you get a handle on this disease before it handles you. I would still advocate for that. It’s just that my body, after 21 years of taking an MS drug therapy, is done. It can’t take it anymore. I now am going to need a partial liver transplant to fix the hit that my liver took due to my MS medication.
Rohe: If medication is out, what other kinds of things are you doing?
Parker: Well, one of the best things that has come out of this is that I will never give up. I won’t ever give up. So I got a little setback. At least when I was in the hospital, I had my monogrammed pajamas on. I was trying to be cute (laughs) and be comfortable! But moving forward, what am I faced with? Well, I’m not giving up. I am getting up. That’s one of the things I live by The chance will always be there to succeed if you just get up. You can try a hundred times or a thousand times, and you may fall down a hundred times or a thousand times, but the chance will be there that you can get up. Just try. If you give up, that chance is forever gone.
So in getting up, I have surrounded myself with a great team of doctors, my amazing supportive husband, who is the best part of my every day, and we have also hired someone. He’s not just a personal trainer, but he’s a certified life coach. He comes twice a week and works out with me because I have so much atrophy in my body right now from MS. And not being able to move, he works with me on keeping the blood flowing, keeping everything going, from my head to my toes and all the way back up. His name is Michael Kapp. He is a true godsend. He understands the challenges that my body goes through. I won’t ever say “can’t do.” Sometimes my leg just won’t bend a certain way. I don’t know why, but after working out, it will bend a certain way. That’s not giving up, that’s getting up.
Rohe: Wow. That’s amazing!
Parker: Yeah! (laughs)