Mom shares her story of caring for her son’s moderate-to-severe eczema

DISCLOSURE NOTICE: Insights for this article have been provided by Maisie Wong-Paredes whose son, Jeremy Paredes, lives with moderate-to-severe atopic dermatitis and manages his condition with non-Pfizer medication. They are both paid as consultants of Pfizer.

When Jeremy Paredes was born, his mom Maisie Wong-Paredes was no stranger to moderate-to-severe atopic dermatitis (AD), also known as eczema. After all, Jeremy’s older brother had also been diagnosed with a moderate form of the skin condition as an infant.

According to the National Eczema Association (NEA), it’s common for individuals with moderate-to-severe AD to be diagnosed before age six.¹  As a child, Jeremy’s symptoms were “on and off,” Maisie explained.

It was not until elementary school that his symptoms worsened and then became severe in high school. Jeremy experienced splotches of eczema on his face, neck, arms, legs and body. Throughout these challenging years, Maisie stood by his side not only as a mother, but as a caregiver and advocate.

Now, they want to inspire others by sharing their story and raising awareness to help those who are suffering from eczema.

Moderate-to-severe AD is a complex disease that has many symptoms, ranging from itching, pain and sleeplessness, to cracked and broken skin.²  These symptoms can make it difficult to engage in everyday activities, as experienced by Jeremy and Maisie as his caregiver.  

Daily tasks such as taking a quick shower could become an ordeal because they had to think about his skin. “The prescription creams, then letting them absorb, then the lotions, then letting those dry,” added Maisie. “All those steps he had to take before he can even put his clothes on.” Regardless of his struggles, “he’s the most optimistic [kid]. He’d wake up every morning saying to himself, it’s going to be a better day.”  

Jeremy missed out on much of the joys of childhood due to his eczema.

“We didn’t do sleepovers because he would be afraid of going to sleep. He would be afraid of itching at someone else’s house. He’d be afraid of getting blood on the sheets,” said Maisie.

As a young athlete, there were many instances where Jeremy wasn’t able to finish his soccer games, due to eczema flares. “He would have to leave the field limping in pain because of the broken skin,” explained Maisie.

In high school, Jeremy was placed on an individualized education plan (IEP) to allow for extra time when he needed it to navigate symptoms and doctors’ appointments between classes. “We were going to clinic two to three times a day to do wet wraps,” said Maisie. In winter 2020, Jeremy’s symptoms were so severe that he couldn’t go to school and had to keep up with all his work from home.  

Maisie reached out to his teachers and explained Jeremy’s situation. “They were all so understanding with us and made accommodations for Jeremy. They assured us that Jeremy’s health must come first.  Having their understanding and support really lifted a burden for us. It was a critical year, being a junior in high school. Grades were very important with college applications right around the corner. The teachers’ reassurances gave us the ability to focus on getting Jeremy well and not worry about his schoolwork,” said Maisie.

During Jeremy’s time at home, Maisie’s focus was to take care of him and make sure he was comfortable. “When I am dealing with an irritating eczema flare-up, my mom instinctively will help me break the itch cycle,” shared Jeremy. She managed his medications, helped with his treatments, and made sure he had whatever he needed.

“She would bring me ice packs to put on my skin, help apply lotion, and do anything she could to distract me from scratching. From small gestures, to being a vital part of my everyday care, I appreciate my mom’s support more than words can say,” said Jeremy.  

“Besides work (which I do from home), I pretty much canceled all activities outside of the house so I could be around if Jeremy needed anything. I was very worried about him and his emotional wellbeing. The eczema was taking a huge toll and the toughest part was we couldn’t see symptom relief in sight,” said Maisie. Jeremy’s condition was not only affecting him physically but was also causing a lot of stress. There are often hidden emotional struggles that affect the daily lives of those living with eczema.

Between countless doctor appointments and hospital visits, Maisie felt frustrations as a mother who could not ease her son’s discomfort. “The poor kid never slept because of the itching. I’d hear the scratching down the hallway and there were times I hid in my closet crying because he would be in pain,” said Maisie. “I didn’t want him to see me upset because then he would get upset. It was really, really rough.”

Being community advocates, together

Maisie continued to be an advocate for her son throughout his struggles with eczema. She created an open dialogue with his teachers, school administrators and coaches and developed a plan with them to set Jeremy up for success both in the classroom and on the soccer field.

Maisie also communicated often with Jeremy’s doctors and dermatologists to find a medication that was right for him, sometimes having tough conversations.

“There was one point where we had been to multiple [dermatologists] and they kept recommending rounds of steroids, with stronger doses each time,” said Maisie. “I remember speaking up and insisting that what they were recommending wasn’t working for Jeremy. It led to tough conversations but at least I was advocating for my son. Looking back, I realize there was not a lot of available treatment options to recommend.”

Reflecting, Maisie feels grateful to have had the support of her community, friends, and family. Eczema can affect entire families, not just the patient and main caregiver, and each of Jeremy’s family members supported him in their own way.

“A good support system really helped, particularly with the middle school and high school years, because even without eczema, they’re really tough years for kids that age and there’s so much going on…having eczema on top of that isn’t easy,” she said.

Over the years, Jeremy and his mom have become involved in the moderate-to-severe AD community, and both stepped up as ambassadors for NEA.

“We attended [NEA’s] Eczema Expos and they were amazing experiences...Jeremy found his tribe. Other eczema warriors who have had similar experiences and deeply understood each other,” said Maisie. “Jeremy could be himself, unfiltered, in a very supportive environment with no judgement. He was finally in a place where he was comfortable in his own skin. No one minded if he scratched, if his skin was flaked on his clothes, or if he had red patches.”

Maisie really appreciates that Jeremy is able to reach out to others like him to connect and share their eczema journeys, and in turn, she can connect with other moms and caregivers. “It gave me a sense of community.” They all shared stories and were able to help each other, from coming up against similar obstacles and how each of them overcame them. They spent time laughing, crying, and celebrating their children’s successes together.

“Going forward, we’re both very motivated to help others through his story and my experience as a caregiver. It’s hard for a teenage boy, or even in that young adult stage, and I love that he’s able to reach a population that’s not normally easily reached,” said Maisie.

“My mom is a great spokesperson for the eczema community, advocating for me and other eczema patients like me. She has been a great resource for other moms and caretakers who have kids or teens with eczema and is loved and looked up to by all of the NEA community,” Jeremy shared.

Maisie believes education and advocacy for patients and caregivers, is important.  

“That’s the thing I want to work on, too, is getting information into the schools so that the teachers and nurses know how to deal with this [eczema] and help the other kids better understand what eczema kids are going through,” she added.

‘Our journey has come a long way’

While she’s still involved in Jeremy’s life, Maisie is proud to watch him become more independent as a college student. “Eczema is a part of who I am. As I grew older, I was determined that eczema would not define me,” says Jeremy.

"He has taken a lot more ownership for his own health, which is great," explained Maisie. "He's done trips now where he's on his own for weeks and he did not let his ongoing battle with eczema stop him from doing the things he loves."

“Just because they grow more independent, the caregiver parent support doesn’t stop when they turn 18,” Maisie said.

Over the two decades that the Paredes family has dealt with moderate-to-severe eczema, this mother-son duo has learned a lot and overcome many hurdles — together.

“Having a strong support system is so important; my mom calls it our village. I have been so lucky to have the same group of close friends since childhood who understand me, my eczema, and my needs. They always encouraged me to stay positive, even when I was going through an eczema flare,” Jeremy shared.

Going into his third year in college, Jeremy is following his dreams. The school’s football program recruited him to create their media content, which brings together his passion for sports and filmmaking.

Even while he’s been away at school, Maisie has worked to find the right treatment options that work for Jeremy. Understanding the journey is a highly personalized experience that is unique to the individual. “What works for one person may not work for another. We need options and it’s been exciting to see new treatments come out. It’s a hopeful time for eczema patients,” Maisie shared.  

Thankfully, Jeremy is also in a good place with managing his moderate-to-severe AD. While his condition is under control with a non-Pfizer treatment he is currently taking, there are many who are still searching for the best treatment option for them.

Expanding treatment options

Moderate-to-severe eczema may be caused by various factors, such as your genes or triggers in your environment. The way that this skin condition impacts individuals varies greatly and finding the right treatment differs from person to person.

One person may be able to manage their condition with a treatment that does not work for another. Likewise, the same individual may find a treatment that may one day stop working, requiring them to find a new treatment option.  

In recent years, the medical field has gained a much better understanding of the underlying causes.³  Dermatologists and health care professionals now have many ways to personalize treatment plans for moderate-to-severe atopic dermatitis.

“We finally have more options for more people, even in just the last five years, because care is so much more individualized,” said Dr. Peter Lio, a practicing dermatologist at Medical Dermatology Associates of Chicago, who also serves as an emeritus member of the National Eczema Association’s Scientific and Medical Advisory Council. “Even if the last option didn’t work for you — well, now I have the next treatment.”

Among the expanding treatment options, the FDA approved the use of CIBINQO (abrocitinib) for treating adolescents 12 to 17 years old in February 2023 — about a year after its initial approval for adults in January 2022. CIBINQO is a Janus kinase (JAK) inhibitor and a once-daily oral pill for moderate-to-severe AD. It can be prescribed for patients with moderate-to-severe eczema who didn’t respond to previous treatments and when other treatments, including oral or injected medicines, haven’t worked well or are not right for them. CIBINQO may cause serious side effects including serious infections, increased risk of death, cancer and immune system problems, major cardiovascular events and blood clots. Please see below for more Important Safety Information.

Jeremy is doing well with the treatment he is on, which is not manufactured by Pfizer.

Being able to customize treatment on a case-by-case basis is one of the most effective ways to help individuals with moderate-to-severe eczema. Having more options to discuss and try has helped medical professionals reach new goals with patients. CIBINQO may be an appropriate option for patients who are uncontrolled on their current treatment.

Please refer to the important safety information below, including BOXED WARNING.

To learn more about moderate-to-severe atopic dermatitis and CIBINQO, visit cibinqo.com.

IMPORTANT SAFETY INFORMATION AND INDICATION FOR CIBINQO

CIBINQO may cause serious side effects, including:

Serious infections. CIBINQO can lower your immune system’s ability to fight infections. Do not start CIBINQO if you have any kind of infection unless your healthcare provider tells you it is okay. Serious infections, including tuberculosis (TB) and infections caused by bacteria, fungi, or viruses that can spread throughout the body, have occurred in people taking CIBINQO or other similar medicines. Some people have been hospitalized or died from these infections. Your risk of developing shingles may increase while taking CIBINQO.

Your healthcare provider should test you for TB before treatment with CIBINQO and monitor you closely for signs and symptoms of TB infection during treatment.

Before and after starting CIBINQO, tell your doctor right away if you have an infection, are being treated for one, or have symptoms of an infection, including:

• fever, sweating, or chills
• muscle aches
• cough or shortness of breath
• blood in your phlegm
• weight loss
• warm, red, or painful skin or sores on your body
• diarrhea or stomach pain
• burning when you urinate or urinating more often than usual
• feeling very tired

CIBINQO can make you more likely to get infections or worsen infections you have. If you get a serious infection, your healthcare provider may stop treatment with CIBINQO until your infection is controlled.

There is an increased risk of death in people 50 years and older who have at least one heart disease (cardiovascular) risk factor and are taking a Janus kinase (JAK) inhibitor (such as CIBINQO).

Cancer and immune system problems. CIBINQO may increase your risk of certain cancers by changing the way your immune system works. Lymphoma and other cancers, including skin cancers, can happen. People, especially current or past smokers, have a higher risk of certain cancers, including lymphoma and lung cancers, while taking a JAK inhibitor. Follow your healthcare provider’s advice about having your skin checked for skin cancer during treatment. Limit the amount of time you spend in sunlight and avoid using tanning beds or sunlamps. When in the sun, wear protective clothing and use SPF 30+ sunscreen. This is especially important if you have very fair skin or a family history of skin cancer. Tell your healthcare provider if you have ever had any type of cancer.

There is an increased risk of major cardiovascular (CV) events such as heart attack, stroke or death in people 50 years and older who have at least one heart disease (CV) risk factor and are taking a JAK inhibitor, especially for current or past smokers.

Some people taking CIBINQO have had major cardiovascular events.

Get emergency help right away if you develop any symptoms of a heart attack or stroke while taking CIBINQO, including:

• discomfort in the center of your chest that lasts for more than a few minutes, or that goes away and comes back
• severe tightness, pain, pressure, or heaviness in your chest, throat, neck, or jaw
• pain or discomfort in your arms, back, neck, jaw, or stomach
• weakness in one part or on one side of your body
• slurred speech
• shortness of breath with or without chest discomfort
• breaking out in a cold sweat
• nausea or vomiting
• feeling lightheaded

Blood clots. Blood clots in the veins of your legs (deep vein thrombosis, DVT) or lungs (pulmonary embolism, PE) can happen in some people taking CIBINQO. This may be life-threatening. Blood clots in the veins of the legs and lungs have happened more often in people 50 years and older, with at least one heart disease (CV) risk factor, taking a JAK inhibitor. Tell your healthcare provider if you have had blood clots in the veins of your legs or lungs in the past.

Stop taking CIBINQO and get medical help right away if you have any signs and symptoms of blood clots including swelling, pain, or tenderness in one or both legs; sudden, unexplained chest or upper back pain; shortness of breath or difficulty breathing.

Changes in certain laboratory test results. Your doctor should do blood tests before and during treatment with CIBINQO to check your lymphocyte, neutrophil, red blood cell, and platelet counts. You should not take CIBINQO if these counts are too low. Your healthcare provider may stop treatment for a period of time if there are changes in these blood test results.

Increased cholesterol levels. You may also have increases in the amount of fat found in your blood. Your doctor should check your cholesterol about 4 weeks after you start CIBINQO and then as needed. 

During the first 3 months of treatment with CIBINQO, do not take medicines that prevent blood clots except low-dose aspirin (≤81 mg daily), if prescribed.

Before taking CIBINQO, tell your healthcare provider if you:

• have an infection, are being treated for one, or have one that won't go away or keeps returning
• have diabetes, chronic lung disease, HIV, or a weak immune system
• have TB or have been in close contact with someone with TB
• have had shingles (herpes zoster)
• have had hepatitis B or hepatitis C
• live, have lived, or traveled to certain areas (such as Ohio & Mississippi River Valleys and the Southwest) where there is an increased chance for getting certain kinds of fungal infections. These infections may happen or worsen when taking CIBINQO. Ask your healthcare provider if you're unsure if you have lived in an area where these infections are common
• have had any type of cancer
• have had blood clots in the veins of your legs or lungs
• are a current or past smoker
• have had a heart attack, other heart problems, or stroke
• have kidney or liver problems
• have abnormal blood tests (low platelet count or white blood cell count)
• have high levels of fat in your blood (high cholesterol)
• have any eye problems, including cataracts or retinal detachment
• have recently received or are scheduled to receive any vaccinations. People who take CIBINQO should not receive live vaccines
• are or plan to become pregnant. It is not known if CIBINQO will harm your unborn baby. Pfizer has a Pregnancy Exposure Registry for pregnant women who take CIBINQO to check your health and the health of your baby. If you are pregnant or become pregnant while taking CIBINQO, ask your healthcare provider how you can join this pregnancy registry, call 1-877-311-3770, or visit www.CIBINQOPregnancyRegistry.com to enroll
• are breastfeeding or plan to breastfeed. It is not known if CIBINQO passes into your breast milk. You should not take CIBINQO while breastfeeding
• are taking other medications, including prescription and over-the-counter medicines, vitamins, and herbal supplements. CIBINQO and other medicines may affect each other, causing side effects. Especially tell your healthcare provider if you take aspirin or any antiplatelet therapies. Ask your healthcare provider if you are unsure

The most common side effects of CIBINQO include common cold, nausea, headache, herpes simplex including cold sores, increased blood level of creatine phosphokinase, dizziness, urinary tract infection, tiredness, acne, vomiting, mouth and throat pain, flu, stomach flu, bacterial skin infection, high blood pressure, allergic skin rash to something you contacted, stomach pain, shingles, and low platelet count.

Separation or tear to the lining of the back part of the eye (retinal detachment) has happened in people treated with CIBINQO. Call your healthcare provider right away if you have any sudden changes in your vision.

CIBINQO may cause fertility problems in females, which may affect the ability of females to get pregnant. Talk to your healthcare provider if you have concerns about fertility.

These are not all of the possible side effects of CIBINQO.

What is CIBINQO (si-BINK-oh)?

CIBINQO (abrocitinib) is a prescription medicine to treat adults and children 12 years of age and older with moderate-to-severe eczema (atopic dermatitis) that did not respond to other treatment and is not well controlled with prescription medicines, including biologics, or when they cannot be tolerated.

It is not known if CIBINQO is safe and effective in children under 12 years of age.

You are encouraged to report adverse events related to Pfizer products by calling 1-800-438-1985 (U.S. only). If you prefer, you may contact the U.S. Food and Drug Administration (FDA) directly. Visit www.fda.gov/MedWatch or call 1-800-FDA-1088.

CIBINQO (abrocitinib) is available in 50 mg, 100 mg, and 200 mg pills.

To learn more about moderate-to-severe atopic dermatitis and CIBINQO, visit cibinqo.com.

 PP-CIB-USA-0905

References:

₁ Weidinger, S., Beck, L.A., Bieber, T., Kabashima, K. & Irvine, A.D. Atopic dermatitis. Nat Rev Dis Primers 4, 1 (2018)

₂ Cork, M. J., Eckert, L., Simpson, E. L., Armstrong, A., Barbarot, S., Puig, L., ... & Chao, J. (2020). Dupilumab improves patient-reported symptoms of atopic dermatitis, symptoms of anxiety and depression, and health-related quality of life in moderate-to-severe atopic dermatitis: analysis of pooled data from the randomized trials SOLO 1 and SOLO 2. Journal of Dermatological Treatment, 31(6), 606-614.

₃ McPherson T. Current Understanding in Pathogenesis of Atopic Dermatitis. Indian J Dermatol. 2016 Nov-Dec;61(6):649-655. doi: 10.4103/0019-5154.193674. PMID: 27904184; PMCID: PMC5122281.

Members of the editorial and news staff of Paste BN Network were not involved in the creation of this content.