This is a question we’ve been asking right along with all of you. Currently, the CDC recommends that these individuals wear a mask:
People who have COVID-19 and are showing symptoms to protect others from the risk of getting infected
People caring for someone infected with COVID-19 in close settings
But as we all know, things are changing rapidly. As of March 30th, two arguments were shared by leading government agencies:
Dr. Robert Redfield, Director of the Centers for Disease Control and Prevention (CDC), confirmed that they are reviewing guidelines on who should wear a mask. The biggest reason for this is that the proportion of individuals who are infected but asymptomatic could be as high as 25%. These people won’t show any signs, like a fever or cough, for up to 48 hours after they’re infected. If everyone is wearing a mask, the 25% carrying COVID-19 will infect far fewer people around them.
Dr. Anthony Fauci, the Director of the National Institute of Allergy and Infectious Diseases (NIAID), has expressed concern that the recommendation to arm everyone with a mask could cause even worse shortages of N95 and other medical masks for health care workers who need them most.
The CDC does have a solution for this need for balance:
During a public health emergency, face masks may be reserved for health care workers. You may need to improvise a face mask using a scarf or bandana.
When searching for a mask please keep in mind that our UV masks were NOT designed to prevent the transmission of airborne illnesses or viruses. If they were, we’d be sending them to healthcare professionals, toot sweet! Our Ultimate Coverage masks, bandanas and gaiters were created to protect against 98% of UVA/UVB rays and are essential for those seeking serious sun protection.
If you are in need of added protection, you can create a mask at home. One of our This is Brave warriors, Bethany, who is immunocompromised and must wear a mask, has been making masks for herself, her children and healthcare workers. Here are some of the tips and tutorials she is using to help prevent the transmission of COVID-19 and other viruses.
When Juvenile Dermatomyositis (JDM) entered our lives, it hit us hard. JDM is a rare autoimmune disease in children that causes inflammation and swelling of the muscles and blood vessels under the skin. JDM makes exposure to UV rays more dangerous as the rays intensify rashes caused by the disease. About three in a million children in the US are diagnosed every year. My son Leo is one of them.
We started seeing symptoms of JDM this past summer. Leo first developed canker sores, then complained about soreness in his legs and a rash spread from his face to other parts of his body. As a parent, these symptoms were easy to associate with relatively harmless and easy to fix issues…growing pains, a change in laundry detergent or a reaction to chlorine. Todd is a nurse and didn’t see anything too alarming until the symptoms kept building.
Leo started having pain while eating and became fatigued with low-grade fevers. Thinking he may have a virus or mono, we brought him to our pediatrician who ran a series of labs. As we continued to rule out one thing after another, we moved to x-rays and ultrasounds. The results were unusual enough that our doctor immediately referred us to the University of California, San Francisco (UCSF).
Within a month, Leo couldn’t walk, stand up from a chair, get in and out of the car, or even get up and down from his bed. He had lost mobility and we were carrying our sweet seven-year-old boy everywhere. He slept most of the day and was severely dehydrated because he didn’t have the energy to eat or drink. Visually, his rashes were getting worse and he was sullen and pale. We were extremely worried and scared. Leo was our bounce-off-the-walls, sporty spice and his health was continuing to go downhill instead of improving.
A team of doctors including pediatricians, rheumatologists, infectious disease specialists, oncologists, pulmonologists and dermatologists at UCSF worked together for a solid week to discuss what could be wrong with Leo.
Then, July 31st, 2019 came, and we’ll never forget it. That day our team of doctors told us that our child, who had been perfectly healthy for seven years, suddenly had a rare and incurable disease. We were in complete shock. Nothing can prepare you for a diagnosis like that. Our lives changed the instant Juvenile Dermatomyositis was diagnosed.
As with many diseases, early detection and aggressive treatment lead to better outcomes. Leo started right away with high dose steroids, low dose chemotherapy and IVIG (Intravenous Immune Globulin). Because he was so young, we had to teach him how to swallow pills, take shots and tackle explaining the difference between a disease and a virus. We waded through our grief and started to adapt to his needs immediately.
Within two weeks, he was back in the hospital because the chemo drug, which we were administering at home, negatively affected his liver. Our rheumatologists recommended taking that out of his mix but adding two more serious chemo drugs which would be infusions. Unfortunately, these chemo drugs cannot be administered to anyone under 18 in our county. So every two weeks, Leo has had to travel five hours south to San Francisco for infusions.
Today, because of JDM, Leo’s immune system is constantly fighting his body’s own tissues and cells. He’s arthritic in 90% of his joints and his muscle weakness is obvious. He has the classic rash around his eyes (called heliotrope) and abnormal swelling and distortion of the blood vessels around the nail beds. JDM can involve organs also, and unfortunately, Leo’s team found nodules on his lungs making his diagnosis moderate or severe.
Leo not only suffers from extreme fatigue and pain from the disease but also a myriad of side effects from his treatments. He has mood swings, weight gain, indigestion, insomnia, anxiety, nausea and he, for now, he can’t participate in any competitive sports. Between the physical pain and the roller coaster of emotions, our seven-year-old is having to grasp a lot of things he never would have had to cope with otherwise. Leo is rebuilding his endurance and strength and we are hopeful that, with treatments and physical therapy, he will get back to living his best life.
Beyond caring for his body and heart, we worry about his future. The same medications that are fighting his JDM also may cause cataracts, calcifications, osteoporosis, early-onset diabetes, cancer, stunted growth, and infertility. One thing we can protect him against are UV rays which can make his physical symptoms SO much worse. We cover Leo in sunscreen and started using UPF 50+ clothing. We live on the coast and Leo loves the beach, so protecting him while trying to maintain his lifestyle is important.
Past, present and future, his battle is our battle and we face it together as a family. There is no rhyme or reason to this disease and there is no cause or cure, but that won’t get us down. JDM is going to realize we are a force to be reckoned with! Leo has taken it in stride and has taught us so much about strength, perseverance, resilience and bravery.
We are so thankful for our local pediatrician Dr. Sarah Poyen for taking us seriously and getting us out to a larger hospital quickly. And for Dr. Kim and Dr. Soulsby, our amazing rheumatologists, that are guiding us through the tunnel, UCSF Benioff Children’s Hospital and Infusion Center, and The Family House for being our home away from home.
JDM is considered an orphan disease, which means not enough of the population is diagnosed to interest the government to research a cure. All research is privately funded and spearheaded by families, providers, community members and CureJM. Leo is actively involved in a research study that is heavily funded by CureJM and CARRA (Childhood Arthritis and Rheumatology Research Alliance). We’re hopeful that this study will help researchers identify ways to detect, treat and prevent JDM.
Our request as parents and as part of the greater JDM community is for you to share Leo’s story and educate others about this rare disease. And if you’re able, please consider donating to www.curejm.com to help us find a cure for Leo and many other children like him!
Some of the most common places to be diagnosed with skin cancer – face, scalp, and ears – are located on your head… So choosing to wear a hat, especially one that is UPF 50+, just makes sense. The bigger challenge is trying to figure out when it is most crucial to have one on your noggin.
Reading a Good Book on the Beach
Whether it’s the ocean or poolside, having your favorite read
teamed up with a wide-brim hat is the duo you’ve been looking for. Spend more
time getting into that New York Bestseller and less time worried about the sun.
Hitting Up the Country Club
Have a membership at the local country club? Hours of direct sunlight on the golf course or tennis courts adds up and can be detrimental to your skin health. With the reapplication of sunscreen and a good hat on your head, you should comfortably be able to play 18 holes unscathed by the sun.
Fishing on the Lake
Summer is all about going up to the cabin, taking the boat
out and taking advantage of the good weather. For the big fishers out there
that just love being on the water and lose track of time easily, a hat with
extended coverage is vital because of the straight hours of direct sunlight and
the UV rays reflecting off the water.
Running Errands Around Town
It’s your day off and it has to be spent buying groceries,
stopping by the bank, picking up the kids from school, going to the dentist’s
office and countless other things on your agenda. With all that scheduled for
your day, the accumulated UV rays add up quickly!
Pro tip: Keep a packable sun hat in your car or purse to always be ready for the sun.
Paired with the Perfect Outfit
A very underrated piece of an outfit that can really bring the whole look together is a well-styled hat. There may be no better time to have a perfectly selected wide-brim hat than for a Kentucky Derby party or event!
If you are struggling to find the right one, our team has designed a guide to help you find the perfect hat that works with your face shape.
Taking the Dog for a Walk
Our furry companions need their exercise too, it’s an important part of being a pet owner. With that being said, typically, you’re taking the dog out for a little stroll during the day while UV rays are present. It shouldn’t be a very time-intensive chore to get prepped for a walk! Simply apply a little SPF 30+ sunscreen and a hat… and voilà!
Enjoying the Great Outdoors
This one is for you adventure seekers that love camping in the woods and exploring nature! If you’re the weekend warrior that joins every hiking group they can, you need a great sun hat paired with some long sleeves.
Regardless of the activity, you’re doing and the style you choose, make sure to get in the habit of wearing sunscreen on your face with your hat to help lessen the chances of extreme sun exposure even when wearing a hat .
New year, new you. It’s a phrase we are all very familiar with and tell ourselves every 12 months. In a recent study, they found that approximately 80% of resolutions fail by February.
The secret to successful resolutions is keeping them realistic and attainable in a way that you feel progress from the start. Go for the win by focusing on things that give you emotional satisfaction as well as outward results. So, here are 6 little things you can easily do to feel good and realign goals you’ve been carrying for the last few days, weeks or perhaps even years. But, this year is different because it is YOUR year.
1. Get Outside
Almost every year, it seems like people sign up for a new spin class or a personal trainer at their local gym. They dedicate themselves to it for two months and burn out. Don’t worry about joining a club, just get outside. It can be as simple as going on a 30-minute walk before you start your day to going on a quick bike ride around the neighborhood in the afternoon. The fresh air will recharge you! Don’t sacrifice your skin though. Keep sun-safe and cool in a hat and UPF 50+ clothes made for fitness, like those that have cooling technology built in.
2. Sign Up for a Lesson or Class
Never too old to learn a few new tricks! An always popular choice is taking up golf or tennis. Just make sure to cover up for all that added sun exposure! Other ideas could be learning a new language or picking up a new computer skill. You’ll never regret owning an abundance of diverse skills later in life.
3. Rekindle Important Relationships
Life gets crazy. It’s inevitable. But NEVER lose sight of, or become too busy for, your friends and family. Make one phone call a week with a distant friend; simply inviting family over once a month for dinner (delivered if you’re not into cooking); that’s all it takes. once a week, to simply inviting family over once a month for dinner, that’s all it takes, and it goes a very long way. At the end of the day, the relationships we have are more valuable than anything imaginable.
4. Take Care of Your Skin
This is one we are really challenging you to this upcoming year. How often are you consciously thinking about the amount of sun exposure you are receiving every day? Whether you are in the car or at work, there are so many sneaky ways that we are exposing ourselves to UV rays! A good habit to start as soon as possible is applying a broad-spectrum SPF of at least 30 daily. Afraid of needing to reapply or having an oily feel to your skin? Choose UPF 50+ clothing that blocks out 98% of UV rays and never washes out!
5. Indulge Once a Week
A classic resolution, like dieting, can be extremely tricky, hence the reason it is a reoccurring challenge. One of the secrets is balance and easing into it. Start by dedicating 5 days a week of healthier food choices and then rewarding yourself with a cheat meal. If you become too obsessed with it right away you will become miserable, and nobody wants to associate food with misery. If you are struggling with figuring out where to start, here’s a great beginners guide to understanding food.
6. Be Kind to Yourself
Be good to yourself. Do nice things for yourself. Reward yourself for all your hard work. We can get so caught up in our jobs or daily chores and forget to take care of ourselves. Need a spa day? Have it. You’ve been looking at that new bike for a while? Get it. That tropical vacation you’ve had your eye on? Book it. Try and do one thing completely for yourself at least once a week.
New Year’s is an end and a beginning. It allows you to turn the page and focus on the new goals you’ve just created for yourself. But remember, all of this depends on you and how ready you are to commit. Make the most of 2020. We are all rooting for you!
We were as disappointed as you are to find this out. In fact, the common forms we develop are what also affect them – melanoma, squamous cell carcinoma and basal cell carcinoma. Although most dog breeds are at risk, Jill Abraham, a board-certified veterinary dermatologist in New York City, told the Skin Cancer Foundation that the ones with “light-colored, short coats and less hair on the belly” are the most vulnerable. Before you start slathering sunscreen on your dog (Yes, you can put sunscreen on a dog), there are a few tips to help your furry companion live a safer life in the sun.
Limit Sun Exposure
Like us, dogs can get sunburned. Ever notice when a dog’s skin looks a little red after coming back inside? Sunburn. We all know how much they love laying out in the backyard sunbathing in the grass, but limiting the amount of time they have in direct sunlight during the strongest hours (between 10am and 4pm) is crucial. Helping encourage them to shady areas is a very good compromise to beating the sun.
A dog’s skin can be damaged by the sun just like our own, so they require the same protection against the development of sunburn and skin cancer.
Richard Goldstein, DVM and Chief Medical Officer of the Animal Medical Center (PetMD)
Here’s a video from Banfield Pet Hospital to cover the rest of the important basics to know about sunscreen and dogs:
Sun Protective Clothing
Hear us out on this one. For the pets with no escape from the sun, you could use some of your older UPF 50+ tops and wrap it around them or even see if it fits without too much struggle. It might sound a little ridiculous, but even Dr. Abraham thinks it’s a viable option. And to be honest, it is always cute to see a dog running around in a t-shirt.
When it comes to our loyal buddies, keeping them safe is a no brainer! One of the biggest final tips on dog skincare is just building up the consciousness of knowing when your dog is receiving too much sun. Now get out there, grab a Frisbee and enjoy a sun-safe life with your loving, furry best friend.
The Holiday season is here, and you know what that means… trying to find the perfect gift. To get inspired for what you may want to get your loved ones, we caught up with some of the Team to find out what they are gifting!
If you know anyone from Coolibar, read at your
own risk because you may find out your present!
Brandyn (For Dad)
Director, Marketplaces & Digital Marketing
For the several years I have worked at Coolibar, it has always been special to gift family members and friends product from where I work. When you start working at Coolibar, you work for the mission as well, and that means really learning about the importance of protecting your skin.
Jumping ahead to the story, my dad is your typical, stubborn father that refuses to go see a doctor until he is seriously ill. He had a few blemishes on his skin that I constantly bugged him about it until he finally caved this year and saw a dermatologist. Luckily, it ended up being nothing, but he shouldn’t be too surprised by my gifts under the tree for him!
Raymond (For Mom)
For everyone here, the mission is very important, but for
me, it’s a little more personal. My mother has a history of melanoma, so when I
started working here, I already had a strong understanding of the importance of
During the holidays, my mom expects nothing but Coolibar from me! She sends me a wish list every year of what she would love from her “favorite kid” after browsing through the gift guide. It is very fulfilling to gift my mother with something that she wants and needs that the company that I work for makes.
Kelly (For Sister-in-law)
eCommerce Data Lead
I love this time of year! Every holiday season, we do a secret gift exchange for my boyfriend’s side of the family and this year I drew his sister out of the hat – Hopefully, she does not see this…
It’s been exciting to see the innovative, yet trendy features of our new collections, so saying I’ve had fun surfing through our site for the perfect gift is an understatement! Hopefully, she doesn’t mind me wearing her gift when we show up. Oops.
Hayden (For Dad)
Social Media Specialist
Eat. Sleep. Golf. That is my dad’s life.
The man has been a golf professional for 35+ years and has spent 6-8 hours a day in direct sunlight EVERY DAY in that span of time. Before working here, my dad was always conscious to wear sunscreen, but that was the extent of his skincare.
Now, after a little convincing, he always wears long sleeves on the course and never forgets his hat! Receiving a gift is always nice (That’s for my dad if he didn’t read the spoiler alert up top…) but getting my father something that helps his quality of life and he loves is an even better feeling.
Michelle (For Kids)
Manager, PR & Strategic Partnerships
Since their grandmother was
diagnosed with Melanoma, my son Oliver and daughter Eloise have become mini
skin cancer prevention advocates. They LOVE to wear Coolibar gear when it’s hot
out, wait for other kids to ask about their long sleeves, then tell everyone
who will listen about the “Coolibar science our mommy makes”. It’s
I brought home one of the
catalogs and as soon as I knew it, the kiddos just started circling everything
they loved. I can’t wait for them to hit up the playground scene with their new
Bonus: Oliver and Eloise wouldn’t be the sun-safe advocates they claim to be if they didn’t take care of the people they love! Every year they pick a UPF 50+ hat for ALL of their teachers. They know that one of the best ways to tell someone you appreciate them is by giving a gift that will keep them safe.
There’s nothing quite like giving the gift of sun protection. Whether it be for protecting someone with a sun-related condition or preventing another from developing one, choosing to gift UPF 50+ products is always a sun-safe bet.
the 20th anniversary of the Enright Melanoma Foundation, I’m retelling
the story of a friend I lost over 20 years ago to rekindle the passion of a
foundation that continues to work in his name.
started with four of us…
Rich Nelson and Peter Colucio were young physicians at the Summit Medical Group (NJ) when Joe Enright and I joined them in 1991. The four of us quickly became friends. Pete was a confirmed bachelor (and scratch golfer), and Rich, Joe and I were married with growing families. We ate lunch together, we played golf, and we often met up at Joe and his wife Kathy’s house for birthdays and barbecues. While Joe coordinated what he fondly called “male bonding weekends”, our wives often took a “spa” vacation together. Life was good.
Joe’s 3-year-old daughter, scratched a mole on Joe, which bled. He saw his
physician and the biopsy revealed melanoma. Joe went back for the “wide and
deep” surgery that was hopefully going to remove all of the melanoma. It
didn’t. Over time, while life continued and little Shelley got a new brother
Nicholas, we learned the melanoma had metastasized.
Joe and Kathy went to MD Anderson Medical Center in Houston for what was the most promising treatment option at that time – interferon. To support him, I collected the signatures of close to 500 coworkers on a “get well soon” banner and Rich and I flew to Houston to be with our friend. While he went through a brutal interferon treatment, we watched the Superbowl together. Even as physicians, it was painful for us to see what this treatment was doing to our friend.
Joe came home, it was clear that he only had a short time left. The four of us
played a final round of golf even though Joe could barely hold a club, but he
never complained. I arranged for a “make-a-wish” type of event and we met one
of Joe’s favorite teams, the New York
Rangers. Joe took pictures with his favorite players (including Mark
Messier!) and got a hockey stick signed by the players. It was great to see a
moment of joy on the face of my friend who was rapidly losing weight, and his
it all, Joe maintained his courage and what appeared to be an inner peace. He
never gave up, and he would not let the melanoma define him. My last memory of
Joe was of him lying on his couch and apologizing to me for “not getting up and
seeing me to the door” when it was time for me to leave. We lost Joe in 1996. Joe’s
death was devastating to me. I had experience dealing with death as a
physician, but I had never lost someone as close to me as a brother.
thought about the things I learned from Joe – his loyalty, courage, dedication,
calm demeanor, his love of family and friends, stoicism, and his love of life. But
it was the quirky things that have stuck with me. Joe taught me…
It is okay not to shave every day.
don’t have to wear a tie all the time.
It’s okay to leave your wallet in the car and
let your friends pay for lunch!
was loved by his family, friends and patients and I wanted the world to
remember him. I wanted his children to grow up and learn about who their father
was and what he meant to his friends and coworkers. And most of all, I wanted
to do something so that no one else would lose someone in the prime of their
life from something that is both preventable and curable if caught early
and I, along with co-workers at the Summit Medical Group, started the Joseph E. Enright Foundation
in 1999 to raise funds to contribute to worthy causes in Joe’s name. Over the
past 20 years, our passionate Board of Trustees has evolved and we have
narrowed our focus and the redefined Enright Melanoma Foundation’s vision—to live
in a world free of melanoma. Our mission is to raise sun-safety awareness and
help prevent melanoma through education and early detection.
the years, the Foundation has held a variety of fund-raising events including
golf outings and bike treks. Joe’s mom, Catherine, has always been at these
events and was my “walking” partner. She could not have been prouder of the
work the Foundation had done which in some way, had eased the pain of losing
involved with the Enright
Melanoma Foundation has been touched by this devastating illness in some
way. We understand the need to be
vigilant, both in terms of sun protection and skin checks. Since starting this
foundation, my own father has had four separate melanomas removed simply
because of my insistence on a skin exam.
Our ask is that you become an advocate for your friends, family, teammates and coworkers – become a free member of our foundation, take our sun safety course, do business with our sponsors and business partners, donate time and money, network and spread our message. Help prevent this from happening to someone you know and love.
Even though the sun may not feel as warm in the fall, UV rays do not end at Labor Day. Sun protection and nurturing skin is no longer a regimen solely for summertime. In fact, doctors warn that cooler months are more dangerous because the sunshine of summer, that serves as a reminder to reach for sunscreen, is gone. So, here’s your nudge to take care of skin as fall gets into full swing. No matter how cool the temperature feels, the sun’s ultraviolet rays can still cause damage to the DNA in our skin within just a few minutes. While UVB rays (burning rays) lessen as the earth rotates away from the sun, UVA rays (aging rays) remain strong with the same intensity year-round. UVA rays powerfully beam through office windows, car windows, clouds, and fog. And UV damage to our DNA is cumulative. Here are some tips for fall and winter skincare and sun protection:
Use broad-spectrum sunscreen daily on all exposed skin, neck, ears, back of hands and your face daily. In locations where snow flies, UV rays reflect off glistening surfaces like snow, and in warmer locations, UV rays bounce off grass, sand, water, and cement back at your face. Be proactive and protect your face daily with an excellent sunscreen of SPF 30 or more. In fact, dermatologists explain the use of sunscreen, when it starts to really cool down, as a “must”. For women, consider using sunscreen as a base layer before applying cosmetics. Many mineral-based sunscreens are moisturizing and protecting at the same time. Apply, rub vigorously so they are fully absorbed, then apply any cosmetics. For men, apply a mineral-based sunscreen as a daily moisturizer and keep a tube handy in the car for reapplications. Don’t stop at your face, cover your neck, chest, and tops of hands.
Most people are unaware that lips do not contain melanin, our skin’s natural defense against ultraviolet radiation. Lips are particularly vulnerable year-round, but in months when the air is drier, they are also susceptible to drying and cracking.
Consider Cosmetics with Built-in SPF
According to Paula’s Choice Skincare, after a layer of broad-spectrum SPF 30, women can use a makeup primer of SPF 20 and a foundation with SPF 15. While the layers of protection don’t aggregate and add up to SPF 65, the layering approach has the benefit of better overall coverage of sunscreen. In general, most people do not apply sunscreen thickly enough. By layering these products one upon the other, this technique provides a “thicker” layer of protection against sun damage.
Reconsider Your Cleanser
When humidity drops in cooler weather, you may want to compensate by switching up your cleanser to a moisturizing cleanser. Look for hydrating ingredients that don’t strip your skin of moisture. Or, if you love your skincare program and don’t want to risk skin irritation by trying a new cleanser or moisturizer, there are ways to keep your routine and just boost it for the winter.
Follow nightly cleansing with a moisturizer made for nighttime. The right nighttime moisturizer will help protect against the red chafed skin in winter and help nourish your skin. If you have sensitive skin, or you’ve experienced reactions to various products, we recommend you meet with your dermatologist. They can evaluate your skin health and offer suggestions on a regimen for sensitive skin that won’t cause irritation before switching.
Wear UPF 50+ Clothing in the Car
UPF 50+ sun sleeves or sun gloves are ideal for days driving. UVA rays (aging rays) penetrate car windows and office windows. The Skin Cancer Foundation cites nearly 53 percent of skin cancers in the U.S. occur on the left, or the side receiving rays while driving. UVA rays are hitting your skin on a road trip, while running errands or driving kids to soccer. In fact, they are reaching your kids too. The Skin Cancer Foundation says clothing is the first line of defense against the sun. Having UPF 50+ clothing in the car or at the office – coverage for arms, hands, necks, and chests, like a long sleeve hoodie or wrap, a neck bandana, sun sleeves and sun gloves – make sun protection effortless. The more you’re covered, the more you’re protected.
UV rays impact the tops of heads as much as any other exposed part of our bodies. So, while you’re out walking the dog to keep her healthy, wear a hat with at least a 3” brim and apply SPF 30+ broad-spectrum sunscreen to other exposed areas.
When seasons change, people forget there’s still sun and sun damage. Get fall-winter ready and stay sun safe with tips above. It’s also an ideal time to check in with your dermatologist and get their recommendations for cool weather skincare.
It was the start of our 10th year of marriage and my husband and I
were going to be a family of three! We were enjoying every moment of our
perfect pregnancy and preparing for our first baby to arrive. I had just turned
37 and I
remember the doctor asking me about testing. My response was, “No worries! If
we find that our baby girl needs treatment, we will do our homework, get the
right specialists and it will be okay.”
On March 23rd, 2009, I got up, got dressed and went to
work. I was sitting at my desk when my water broke. Then, 20 hours of labor and
a c-section later, Marissa arrived! The first thing I remember was everyone’s
facial expressions while I waited on the other side of the curtain to see my
daughter. In a conversation with my mother and husband, the doctor said, “No,
the redness won’t go away. We will talk more tomorrow.”
What did that mean? I wanted to see Marissa even more to figure
out what they meant. When I looked at her and saw the port wine birthmark and
her swollen eye I thought, “She can’t go to school like this. We are going to
need help.” I knew our world was going to be different than other new parents,
I just didn’t know yet how different.
The next morning at the crack of dawn, our hospital room became a
revolving door. Doctor after doctor arrived. Every doctor that came by left me
with the feeling that more was coming, and I needed to prepare. When a
dermatologist arrived, I thought, “Wow! They’re taking Marissa’s ‘birthmark’ pretty
seriously to send a specialist so soon!” Finally, the pediatrician explained what
could, should, or might happen with Marissa… starting with a CAT scan. I was
screaming on the inside. “What does all this mean? Yesterday, they said it was
just a birthmark and bruising, now my day-old baby needs a CAT scan!”
The results came back. They had been looking for calcifications (whatever
that meant!) and luckily didn’t find any. The neurologist explained that
she may have Sturge
My head was spinning. I had no idea what that was, but we focused on the
good news and started to relax and get ready to take Marissa home.
As the weeks turned into months, Marissa had check-up after check-up.
I started to learn all I could about Sturge Weber Syndrome. I wanted to
understand her port wine birthmark and the treatments for it, and to learn more
about what I needed to look for in the future, like glaucoma and seizures.
I came across The Sturge Weber Foundation and we decided to attend a conference as a family. When we arrived, a larger-than-life lady came out of nowhere, scooped up my baby girl and loved her so tight. My shock turned to joy as she was the first person that didn’t look at Marissa with any judgment. I never felt so comfortable or free to talk about the syndrome Marissa might have and what we were going through as a family. We’d found a new home.
Thank goodness we had them because when Marissa reached 10-months our world turned upside down. Marissa cried and moaned all morning, then out of nowhere she vomited, and back-to-back seizures began. It took nearly five days to control the seizures. It was official. We had a Sturge Weber Syndrome diagnosis and we were sent home with medication.
It happened again when she was two and a half years old. These
seizures were even harder to control. We were sent home again after five days
with even more medications. She also developed glaucoma around this time.
Everything they said could happen with Sturge-Weber was happening. Luckily, we
Today, Marissa is 10 years old and is holding steady. She may have
more doctors than the average 10-year-old and has a harder time doing the
things her friends can do, but her life doesn’t stop every time she gets sick. She’s
a champion for positivity and hope and she teaches me something new every day.
We always try to keep Marissa protected. We slow down when she’s sick to reduce the risk of seizures. We also protect Marissa’s skin, especially her birthmark from sunburn as it can burn easier, with clothes and hats from Coolibar. She needs protection all the time, so helping her develop a habit of covering up has been easier than constantly applying sunscreen. With Sturge-Weber Syndrome Marissa has still accomplished so much in her 10 years. She’s gone on vacations, advocated on the hill, participated in dance, sports and music, and she swims every week with her Special Olympics coach. Yes, she will struggle physically because of her syndrome, but she’s not afraid to tell her story and she believes in herself!
Every day, I am so proud of her. We don’t know what
tomorrow will bring for Marissa, but we’re so grateful that we have the
blessing of watching the rest of her story unfold.
To learn more about Sturge-Weber Syndrome and hear more stories
about wonderful people like Marissa, please visit sturge-weber.org.