Most 18-year-olds are focused on graduation, prom, college, and new beginnings. For Madison “Maddie” Hoffman, the future is bright, and her journey there has required a level of strength most people won’t face in a lifetime. Born with

Diagnosed at birth, Maddie’s family, friends and Cook Children’s care teams have been impressed with her continuous resilience in facing prejudice, bullying, mental health challenges, pain and hospitalizations due to skin infections. Maddie says she feels empowered to raise awareness of skin conditions and rare diseases.

“God has been so good to me and that resilience comes through because my mentality is ‘OK, it could be worse. How can I make it better?” Maddie said. “How can I make somebody else’s life better?”

There are more than 30 distinct types of ichthyosis, which are rare, mostly genetic disorders. The type Maddie has, epidermolytic ichthyosis, occurs in approximately 1 in 200,000 individuals, according to the National Organization for Rare Disorders. Maddie wants to let other children with rare diseases and disabilities know they aren’t alone.

“I can’t change (my condition), so I might as well use my disability as something really powerful,” Maddie said. “Don’t count us out in this world. We will always 1,000% surprise you. We are empowering people. I believe people with rare diseases can change this world. I believe I can change this world.”

Cook Children’s dermatologist, Heather Volkman, D.O., says Maddie’s form of ichthyosis makes her skin barrier very fragile and more susceptible to infections. Imagine if you had an open blister at all times. If Maddie acquires bacteria on her skin, such as methicillin-resistant Staph aureus (MRSA), which can be resistant to many antibiotics, it can be difficult to treat the infection and sometimes require hospitalization for intravenous antibiotics. Her hands and feet are predominantly affected.

“I get frustrated sometimes because of what (bacteria) goes into my body, especially when it comes to infections,” Maddie said. “You just have to remember that you can get through this if you have the right resources, a hospital, and I have my mom. It comes down to your mentality and how you take care of yourself.”

Journey & Resources at Cook Children’s

Maddie graduated from Aledo High School a year early and completed her junior and senior years in three months. She currently works in child care and hopes to become a Child Life Specialist to give back to Cook Children’s and support patients.

“Cook Children’s has definitely given me the resources, the tools and the education,” Maddie said. “I want to give back. The amazing nurses and doctors, Dr. Volkman, have changed my life. They’ve given me this new life I wouldn’t have without Cook Children’s.”

Maddie regularly sees Ear, Nose and Throat (ENT), wound care, infectious disease, pain management and dermatology teams at Cook Children’s.

Patients with rare diseases often face limited access to new medications because clinical trials, which are essential for the Federal Drug Administration to approve a drug and for it to be covered by health insurance, often have small patient populations. Dr. Volkman commends Maddie and her parents for being determined to find new medications to help patients with ichthyosis.

Maddie has faced four to five major skin infections that required hospital stays at Cook Children’s. She had two hospital stays in December 2025.

“I was so defeated because of this infection and it was a hard time for me,” Maddie said. “The nurses and doctors just keep you motivated. They’re so interactive and they truly get to know you. It truly makes a difference.”

Maddie said her favorite moments were seeing the Cook Children’s holiday light display and watching the Cook Children’s Radiothon.

“It’s the holidays and it’s the last place you want to be, but they do the little things like that. It was so cool,” Maddie said.

Maddie’s Mentality

Dr. Volkman says Maddie is a very strong young woman because she faces symptoms like pain and itching, but also quality-of-life issues with having a visual condition. She notes that some people incorrectly believe ichthyosis is contagious, but it is not.

Maddie’s mother, Emily Preston, recalls how it broke her heart when Maddie was bullied as a young girl and in her teenage years.

“People can be so cruel and not inclusive,” Emily said. “I instilled in her, for as long as I can remember, that those are not the kind of people that you want in your life and in your circle.”

Maddie says mental health is not talked about enough, so she is open about her own journey. She relates to other people with disabilities that she meets because it can be isolating to live with a condition or disability.

“I’m learning how to be proud of everything because it’s not something that’s wrong with me,” Maddie said. “I can use this anxiety and depression to inspire other kids or other people because you’re not alone in these battles.”

When Maddie was in elementary school, Cook Children’s Child Life Specialist Kat Davitt visited her school to present a program on ichthyosis to build empathy among classmates, help prevent teasing, and help her feel more confident about returning to school. It also helped educate her classmates about how ichthyosis affected Maddie. All these years later, Emily said it was a game-changer. When Maddie was at Cook Children’s Medical Center - Fort Worth in December, she and her family ran into Davitt.

“Maddie was such a strong child from the beginning and I can remember when we kind of passed the torch and she got comfortable talking about it,” Davitt said. “A school program can give words to the patient themselves. As they grow up, they feel more comfortable talking to their friends. It was lovely to see her and that we were able to give her the support she needed.”

Taking Care of Herself: Skincare Routine

Maddie came into this world fighting -- she was born seven weeks early and her mother says she looked like she was burnt because her skin was extremely red, dry and peeling off. They knew she had ichthyosis. Her care team kept Maddie’s skin hydrated and infection-free until she was ready to go home.

Emily also has ichthyosis. By the time Maddie was in pre-K, kindergarten and elementary school, Maddie’s skincare routine took two hours every morning. As Maddie grew older, Emily empowered her to understand the importance of caring for her skin.

Maddie applies Aquaphor on her face, neck and back in the morning and uses Vaseline at night. Her skin requires constant monitoring because it can change from one hour to the next, and it’s important to note these changes to catch infections as early as possible.

Spreading Awarenes

Maddie wants to help others by raising awareness of this rare condition and what life with it looks like.

Maddie remembers when she realized how rare her condition was and that other kids weren’t at doctor’s appointments all the time. She encourages people to be kind.

“You see other kids getting better and you’re asking God, ‘Why am I not getting better?’ but I am,” Maddie said. “I strongly believe that I’m being used to go out in this world and educate and be that light, because there’s so much darkness in this world.”

But these patches of darkened skin called acanthosis nigricans may also be a sign of something more serious, said Joel Steelman, M.D., an endocrinologist at Cook Children’s.

The exact cause for acanthosis nigricans appearance is not yet known, but current scientific research suggests over-growth in the outer layer of the skin lead to the darkened, rough, velvety patches of skin seen in the condition.

Common body areas where patches of acanthosis nigricans may be seen include the neck, knuckles, armpits, elbows and knees. It can be more widespread and impact areas like the face, chest or belly. In severe situations, it can even be seen in the lips or cheeks.

The condition appears equally between boys and girls and seems to be more common in Hispanics, African Americans and Native Americans, compared to other ethnic groups. One recent study found about five-fold higher likelihood of acanthosis in blacks or Hispanics, compared to whites.

Dr. Steelman said in an overall healthy child, the most likely cause of acanthosis nigricans is a higher level of the hormone insulin in association with obesity. Insulin helps the body grow and store energy from food. That growth effect from too much insulin is thought to be the reason in most obese children causing the skin to develop acanthosis nigricans.

“Since, the main cause for acanthosis nigiricans is linked strongly to obesity and a higher risk for diabetes, I recommend that parents first take steps at home to manage their child’s weight,” Dr. Steelman said. “These steps which include making improvements in the diet and encouraging more physical activity pay off in so many ways.”

The changes Dr. Steelman recommends should be something that the whole family does together. He says this will benefit parents, grandparents and others in the family. If there is a strong family history of diabetes or their child is considerably overweight, parents may want to bring their child to their pediatrician for a checkup. Labs may be ordered to search for higher risk findings for diabetes or metabolic syndrome. Also, more detailed kinds of investigation may be needed in children who don’t have the usual medical history seen with acanthosis nigricans risk.

The skin condition itself doesn’t usually cause too many problems for the child, other than causing the child to be itchy in a few cases. Topical treatments applied to the skin like moisturizers, bleaching creams, and exfoliating creams are used in situations where the person is bothered by the appearance of the acanthosis.

“But the main treatment begins with a talk about obesity and weight,” Dr. Steelman said. “I think the discussion has to be framed in a way to discuss the reward and minimize the negative. It may sound pretty trite, I know, but it really means a conversation about, ‘Let’s get healthy.’ Getting healthy means a lot more than just looking good. It means feeling better, achieving more, etc.”

Read more about acanthosis nigricans here.

- Credit to KidsHealth® for photo.

Get to know Joel Steelman, M.D.

Dr. Steelman is an endocrinologist at Cook Children's. He trained in endocrinology at the University of Colorado Children’s Hospital in Denver, where the magnificent setting turned Dr. Steelman into a lifelong outdoor sport enthusiast, with a strong desire to lead a healthy life. On his rare days off, he could be found skiing, mountain biking and trail running. He loves to go back to the Rockies as often as possible, and just a few years ago, he ran the Pike’s Peak ascent half marathon. He continues to run for exercise regularly. 

During his tenure in Colorado, where he met his future wife, Dr. Steelman trained at the internationally renowned Barbara Davis Diabetes Center, one of the world’s largest and most esteemed diabetes medical facilities for adults and children, specializing in type 1 diabetes research. Along the way, he discovered another strong research interest in the area of bone disorders, and Dr. Steelman began to treat children with osteogenesis imperfecta, or brittle bone disease-- a rare, crippling malady. After completing his training, Dr. Steelman left the West to enter academic medicine at Vanderbilt Children’s hospital in Nashville, Tennessee. Over the next seven years he focused on research projects and medical education.

As a self-described ‘techie,’ Dr. Steelman has a keen interest in the wise use of technology to improve medical care. Since 2001, he has helped implement electronic medical recordkeeping in two endocrine practices. He still loves to write, and he is a regular contributor to Checkup Newsroom.

While the increase in self-injuries may not seem that extreme, Lisa Elliott, Ph.D., a licensed psychologist and clinic manager of Behavioral Health for Cook Children’s in Denton, said the study does not tell the entire story. Sometimes the degree of cutting, for example, may not be severe enough to receive medical attention.

Elliott presents to schools, churches and community organizations on the issue of teens and self-harm injuries. She also treats patients in her practice.

“It can be difficult to determine the prevalence of these types of injuries accurately due to the secretive nature of self-harm prevalence,” Elliott said.

Elliott says that the most accurate numbers show that 20 to 23 percent of teens engage in some type of self-injury. The age of self-harm abuse typically begins between the ages of 12 to 14 years old.

Research shows that gender differences appear only to be associated with method of self-injury. Females are more likely to use cutting. Both genders use burning and self-battery. Caucasians are significantly more likely to engage in self-injury than non-Caucasians.

Methods of self-harm include:

• Cutting (70 percent of self-injuries)
• Carving
• Scratching/biting
• Burning/abrasions/branding
• Hitting themselves
• Picking/pulling skin and hair
• Head banging
• Tattooing
• Excessive body piercing

Injuries are most commonly found on arms, hands, wrists, thighs and stomach.

"This is something we see quite often, mainly in female teenagers, and it has increased dramatically in the last several years once it became a 'thing' that teenagers do and have seen or heard about," said Corwin Warmink, assistant medical director in the Emergency Department at Cook Children's. "It is a response to stress and anxiety and gives the performer a sense of control and eases their anxiety. It is not a suicidal behavior, but some studies have shown people who perform self-injury are more likely to commit suicide than people who do not. It also can be indicative of a more serious mental disorder."

So why do kids harm themselves?

“Kids who repeat self-harm injuries are often trying to ease some type of intense, overwhelming negative emotion such as anger, pain, anxiety or frustration,” Elliott said. “That’s the most common reason, but the second most common reason is self-punishment. They are expressing anger at themselves. This is strongly connected to self-derogation and criticism.”

Other reasons for self-harm include:

• Interpersonal influence – as a means to garner affection/caring from others, to identify/connect with others who have self-injured, to “belong” or fit in with a peer group.
• Stress management.
• To feel a sense of control over their own body, feelings or life situations.
• To provide a distraction from painful emotions through physical pain.

Kids who engage in self-harm behavior are more likely to tell and seek help from a peer their own age than tell a parent. Usually, adults only become involved if that peer tells a grownup and asks for help for his or her friend. Other times, a teacher or coach hears talk among other teens and steps in to help.

Elliott offers these tips to identify if your child is involved in self-harming behavior:

• Dressing in long sleeve shirts/hoodies even in hot weather.
• Wearing concealing outfits.
• Avoiding activities such as sports and swimming.
• Making excuses for having cuts, marks, wounds on body.
• Finding razors, scissors, lighters, knives in unusual places such as under the bed.
• Spending long periods of time locked up in bedroom or bathroom.

For more information

To schedule an appointment or refer a patient to Behavioral Health Services, please call 682-885-3917. To have Lisa Elliott speak more on this topic at your school, church or community organization, click here.

In the state of Texas, it's illegal for anyone under 18 years of age to use an indoor UV tanning facility, even with a parent's permission. But recent studies show that the use of tanning beds can become an obsession and parents need to make sure their child is not finding a way to work around the law.

Why?

The dangers of cancer:

• Ultra-violet (UV) light in tanning bed is known to cause cancer.
• Every year, more than 170,000 cases of skin cancer related to indoor tanning are diagnosed.
• One indoor tanning session increases your risk of getting melanoma skin cancer by 20 percent.
• Melanoma is the second most common type of invasive cancer in teens and young adults and is the leading cause of cancer death in women ages 25 to 30.
• One indoor session increase your riks of getting squamous cell carinoma by 67 percent.

"While all tanning is bad, tanning bed usage exposes people to ultraviolet A rays," said Sandra Peak, M.D., a Cook Children's pediatrician in Lewisville. "UVB rays cause sunburn, but UVA rays penetrate much deeper into the skin."

Other icky health risks may also be found at your local tanning salon, including bacteria that can lead to staph infection. Regular trips to the tanning bed can also change skin texture and cause sunspots, which probably aren't what your teen is after.

So what if your child begs you to go? It's time to talk.

"Parents should sit down and discuss the risks of indoor tanning with their children," Dr. Peak said. "Melanoma has become the cancer of young people."

Instead encourage your children to use a self tanner to get that summer glow, and urge them to always apply a broad-spectrum sunscreen with a minimum sun protection factor of 15 before heading outdoors, even during winter months. Dr. Peak recommends staying away from spray tans, since the chemicals can damage delicate mucus membranes.

About the author

Sandra Peak, M.D., joined Cook Childrens Physician Network in Lewisville in 2004. Dr. Peak enjoys gardening, yoga, and boating and in her spare time can be found at the lake with her husband Jay, stepson Sage and the world’s most amazing Lab, Sugar Mae.