Our Celebrity Baby Trends founder, Rachel Urso, is known for many things. She has a highly successful, 16-year career as a publicist to over 250 brands; she works with A-list celebrities to create brand buzz; she founded ‘Family Fun Day Sunday’; and is a mother of six, wife and humanitarian. She is beautiful, bright and a gifted speaker. She is known as a “Celebrity Baby Trend Expert” on television and her entire life at home and at work revolves around ‘Parenting.’
Rachel has been on, or produced segments for CNN, The Today Show, The Early Show and many others. She’s the host of the ULIVE/Scripps Networks show Rachel’s Haul. Now Rachel will be known for one more thing—being a lupus awareness and cure advocate.
Rachel’s Diagnosis – “Bittersweet”
“Finding out I have lupus was very bittersweet. I finally know what is going on with my body, and I am working with doctors to treat it and live with it,” says Rachel, who was recently diagnosed with lupus, an autoimmune disease that affects more than 1.5 million Americans. Seems “common” but it is not. Rachel cringes when people say, “Oh, isn’t that common?” She comes back with “It’s a non-curable disease and not a head cold so… no, it’s not common.” She understands how everyone is trying to be supportive and how it must be awkward or even scary for someone to hear she has a “disease,” but she wants everyone to know that lupus is not contagious.
Her doctors believe the “lupus switch” was turned on from the fertility drugs she took in order to have her beautiful baby, Brooke. She was predisposed to lupus from the debris that covered her skin during the 9-11 tragedy. This means she did not get lupus genetically. She was affected by the environment and then started flaring after a fertility doctor gave her medication to get pregnant. This is called “drug-induced lupus”.
“I have no regrets as she is a miracle and the sweetest baby you could ever ask for. Ladies, if you are going through infertility treatments, ask about the risks of Clomid and other ‘lupus drug inducing medications’ they may offer you. I had a few very early miscarriages that were most likely and ironically from having lupus that was in remission or not yet turned on. My husband and I asked for a fertility specialist to help me conceive and carry a healthy pregnancy and their drugs most likely turned on my lupus switch. I should have asked to get tested for every possible cause of early miscarriages before heading to a fertility specialist. Most doctors will test you for lupus after a second or third loss. Ironically, Brooke was conceived naturally, after we stopped taking this drug. I am relieved to tell you that Brooke, along with my other children and mother, have tested negative for lupus.”
Rachel has systemic lupus erythematosus (SLE or lupus) which is a multi-system disease and she has subacute cutaneous lupus erythematosus (SCLE) which is a nonscarring, non-atrophy-producing, photosensitive dermatosis. She is being watched for thyroid cancer and she gets regular blood work, scans and x-rays to get on the proper treatment plan. You will read more about this disease and her symptoms and advice here…
Lupus National Advocacy Summit, Hope Gala, Race For Rachel – Race For A Cure
Just as Rachel takes on anything with which she is faced, she’s staring down lupus – head on, and announcing that she is becoming a dedicated activist to find a cure for lupus. This is especially fitting as this is #LupusAwarenessMonth sponsored by the Lupus Foundation of America. She wants to be a support group leader for all looking for direction, answers or need a simple hug.
Rachel will be attending several lupus events to speak out against this cruel disease for herself and others affected, beginning with the National Advocacy Summit. It will be held June 15-16 in Washington, D.C. It’s an opportunity for lupus activists from across the country to meet with their legislators and advocate for lupus research and education funding. Trust us when we say, she will let her voice be heard— she will! We hope those legislators are ready for her!
On October 21, Rachel will be attending the New York Evening of Hope Gala, which will be held at Gotham Hall. The event recognizes outstanding champions for those living with lupus, and raises funds for lupus research and educational programs.
As we speak, Rachel is already in talks with Connecticut organizations, news networks, media outlets, and a nationally recognized fitness gym to kick off ‘Race For Rachel – Race For A Cure‘. Watch for future announcements on our social pages and be sure to come have a fun run to help beat this disease! She is not going to pull the covers over her head and let this beat her even though she often feels she should.
Rachel’s Lupus Symptoms
Lupus symptoms vary from person to person and range from annoying to life-threatening. Rachel shares her symptoms to make others aware of what could be lupus. They include swollen lymph nodes in her neck, joint pain and inflammation, muscle and weight loss, blurry vision, hair loss, itchy skin and scalp, periods of fatigue, irregular menstrual periods, chest pain, heart palpitations, cold hands and feet, migraines, occasional nausea, and insomnia.
Other symptoms during a flare for Rachel include short-term memory loss (“I’d walk into a room and forget why I was there”), feeling like you’re in a “fog,” and your brain has difficulty finding the right words at times. This is known as “Lupus Fog.” Another red flag for her was the coming and going of a butterfly-shaped rash spanning the bridge of the nose and cheeks. This is the “Malar Rash.” It is estimated that 30% of “Lupies” get these rashes during flares.
“I’m catching up to my husband—I’m almost a million-mile flyer who used to love to fly,” Rachel explains, “until I experienced a slight panic attack on a short flight from New York to Florida recently. The plane seemed to be closing in on me as we were taking off. I felt trapped and I had to have a glass of wine at 11 a.m. to get me through it.
Rachel tells women (and men) who suspect they may have lupus to listen to their instincts. If you are experiencing any of the symptoms of lupus, see a rheumatologist who specializes in this autoimmune disease. The doctor will listen to your short (or in Rachels’ case) long list of symptoms, then he or she will look you over (head to toe) as they look for physical and obvious signs. The first blood test that they will run is a called ANA. They will test for many other disorders or deficiencies such as low cortisol, vitamin D, diabetes… If you think you may have lupus Rachel says, “My best advice for someone who feels lost or confused is to insist on an ANA blood test. It’s simple and you gain clarity within a few days.” An ANA titer results in the range of 1:40 to 1:80 (or greater), together with lupus symptoms, indicate the presence of the disease. Very few “normal” people will have a positive titer and not have lupus. If you have no symptoms and get a low 1:40 – 1:80 result you do not have lupus. Rachel shares that she has a titer of 1:320 along with most physical symptoms, which indicates moderate to advanced lupus.
Rachel learned she had lupus only three short months ago, after having pain and symptoms for more than two years, one week after her 42nd birthday. “I knew for some time that something was really wrong, but I thought it was related to having a baby later in life” Rachel says. “I finally know what is going on with my body but finding out that this disease has no cure is a shocker. Lupus, you chose the wrong lady! I am ready to take you on. For myself, my family and all of us who suffer daily.”
Rachel has flare ups nearly every day, when the symptoms worsen and she feels very ill. “I feel like I’m going to have heart (or lung) failure and I want it to stop. I’m a tough cookie and I can handle the pain, but to think I may not see my children grow up is unbearable. When I feel chest pain, left shoulder pain, can’t catch my breath or feel my heart racing, I ask myself if I should race back to the hospital for yet another run of tests. I spend an hour or two wondering if I’m about to have a stroke or a heart attack right then and there. Every day I pray about being able to be there for my kids while they need me and how I want to witness their graduating school, getting married and one day having children of their own. I don’t want to come off all about me or melodramatic because I am not. This is how I feel.”
All Organs Are At Risk
Rachel recently had a biopsy of thyroid tissue and the doctor found a nodule with irregular borders and vascularity through it. Though not a concern yet, as a lupus patient, Rachel has a greater chance of getting some form of cancer in her lifetime, so this is another possibility she will need to keep on top of. Doctors are watching the growth of the nodule and she considers having it removed as a preventative measure. Cardiovascular and lung issues, along with kidney failure are also more prevalent among lupus patients. They are more susceptible to seizures, strokes, heart attacks and cancer. All organs such as skin and hair are at risk, and lupus can attack any part of the body.
“If you were diagnosed in the 1950s with lupus, they told you that you had less than five years to live,” Rachel says. “If you were diagnosed with lupus in the 1990s, you had less than 10 years. Thank God it’s 2015 and 80 to 90% of people living with lupus can live their normal life span—if they stay on their treatment plan and monitor the disease.” Rachel believes in natural healing. The power of positive thoughts, perseverance, education, fitness, healthy eating, and most of all her support system. The daily medication is a must to keep inflammation down and in order to gain remission against flares. Inflammation and flares for Rachel seem to be triggered by UV rays, secondhand smoke, and stress. All of which she is avoiding as much as possible.
Remission can take 3 to 6 months—or years. Rachel gave Prednisone the boot after two weeks and has been on Hydroxychloroquine (plaquenil) for two months to reduce flare ups. She takes Biotin for her hair and a prescribed vitamin D supplement. Other elements of her recovery plan are yoga, fitness, reducing stress, and trying to get enough sleep. “I was told to stop working,” Rachel shares. “After 16 years building my reputation, that isn’t going to happen. I will slow down but I will not dissolve my businesses (RachelFlorioPR, Celebritybabytrends, Family Fun Day Sunday, Designer Diaperz…). I haven’t missed a deadline yet and it will stay that way.”
Rachel’s husband Rob is in Europe this week, and will be in Minnesota next week, and Shanghai the week after that. Because he wants to be with Rachel and their family through this very difficult time, he would like to leave his job to find a position that will keep him local. Though that would be an obvious comfort, Rachel isn’t giving in. “I refuse to let this disease burden my family or give me any less of a life. I’m going to live as well as my treatment plan allows me to. I will fight for myself and my family and those who are suffering.”
You Don’t Look Sick
A common reason why lupus is called a “cruel disease” is due to the not knowing why or how the “lupus switch” gets turned on, having no cure, and why it may take you an average of six years to get diagnosed. Many symptoms overlap and can be considered to be common. This happens often because “you don’t look sick.” Below is a picture of Rachel, who doesn’t look sick. Unless her malar rash appears, as it does every other hour throughout the day, you would have no clue. You suffer silently and you feel alone. No one knows. It is frustrating to go through so many symptoms and continuously get misdiagnosed as Rachel has been. “It took years of examinations. Dermatologists said it was rosacea. Feminine doctors thought it was a common infection or part of aging. GP’s said to slow down and simple antibiotics will wash away the symptoms I shared. I stayed up many nights with my husband reading every medical blog and disease known to man and I actually self diagnosed myself with lupus. When I walked into my rheumy’s office he cockily told me to relax: “You don’t have lupus.” Within an hour of listening to me and examining me (pre-ANA testing), he handed my husband a form and prescribed me Prednisone. He told us he is sure I have lupus and just needed the ANA titer results to confirm it. He started educating me on the treatment plan I am now on.
For the last decade, Rachel’s email and all signatures have been ‘Smile and Pass It On’. “My life’s mission is to make others happy. It may be cliché, but it’s true; don’t sweat the small stuff; it’s not worth a moment of your precious (healthy) time. Celebrate life. When my time is up, I don’t want anyone crying. I want everyone to Smile and Pass It On. And I want a party on the beach where I find my peace.”
You Can Help Find A Cure
We ask you to please share this article with your family and friends to spread awareness about lupus. Rachel and many others need a cure!
For additional ways to get involved, see Lupus.org
Love You Back – A Word From Rachel Urso
I want to start by saying how amazing my husband Robert has been, as well as my parents, children and my closest friends, clients and CBT team members. It’s been a few months of testing and biopsies (and more testing). I am very blessed to have them and all of you in my life. Please leave me a comment here. I am here for you too! Smile & Pass it on…
DISCLOSURE: Rachel and the writing staff of Celebrity Baby Trends does not claim to be medical experts or medical doctors. This is a personal announcement to our friends and fans and anyone that is looking for a support system or more information on this cruel disease. This is Rachel’s personal experience and mission in saving her own life and others that follow her. The knowledge she is sharing is from what she has received through many medical advisors, doctors, activists and through self-education.