October 28, 2020 / All Stories

Trapped in your own skin

See how one person living with severe atopic dermatitis found the strength to take charge of her life and help others do the same.

When the mirror feels like the enemy

Imagine being afraid to look at your reflection in the mirror. That was África Luca de Tena’s struggle when she had to go out. At 19-years-old she’d lost all hope, but not just because of her appearance.

She had struggled with atopic dermatitis (AD) all her life, spanning different doctors and several care options. Nothing seemed to do the trick. Nearly her entire body was affected by the disease, she says. Her body was covered in wet, cracking rashes. Her skin burned and itched. She felt claustrophobic.

“I felt like I was trapped in my own skin,” she says. “I wanted so badly to just take off my own skin for a while and hang it up somewhere so that I could rest.”

But her skin wouldn’t let her rest. Frustrated and feeling like nothing could help her, she stopped going to the doctor. Her family, worried for her health, convinced her to reconsider.

One day in a shopping mall, África accidentally saw herself in a mirror. Her reflection triggered a panic attack on the spot. After she recovered, she knew she had to face her fear.

She finally found a dermatologist whom she connected with and who inspired her. Through honest conversations about her disease and goals – a key to good care, she would learn – she was able to change her outlook on her disease and her life. Today, she’s achieved her goal of working as an actress in Spain, where she’s also the founder of an atopic dermatitis advocacy group and an inspiration to others around the world who struggle with the condition.

"I was so ashamed of the way I looked when I was younger, and I thought I just had to stop fighting it and accept that this is who I was,” África says. "I hope my story inspires others to keep fighting.”
 

‘It felt like it was in my bones’

People might think they understand atopic dermatitis, África says, but most don’t understand how debilitating the disease can be. Atopic dermatitis, also known as eczema, is a chronic inflammatory condition that can lead to painful rashes and oozing, bloody skin.1 Moderate to severe atopic dermatitis covers much larger areas of the skin, triggering a frequent and intense cycle of itching and scratching.2

Severe atopic dermatitis has afflicted África since she was very young. When she was a baby, her parents noticed bleeding on her legs due to wounds on her dry skin. They took her to a dermatologist, who diagnosed her with the disease.

When she was a teenager, África’s disease would become so severe that it was painful to sit, lie down to sleep or even wear clothes. The skin on her fingers was so dry that closing her hands would make her bleed. She felt like her entire body was an open wound.

“The itchiness was so deep that it felt like it was in my bones,” África adds. “You want to scratch and scratch, and it’s never enough.”

At one point, she was so ashamed of her appearance that she didn’t want her parents to see her. That’s when she closed the door on her care. After years of new doctors and new care routines but no change in her condition, she was sure that nothing could be done for her.

"When I saw the doctor, I started crying, and I said, ‘I’m sorry because I know there is nothing you can do for me,” África says. “But then for the first time, a dermatologist told me that you don’t have to accept how your life is. We can try to change it. My eyes opened wide, and that’s when I noticed some changes.”

África at a young age, living with atopic dermatitis.

A mission of building trust

Today, after a lifetime of fighting atopic dermatitis, África has a wealth of experience and lessons learned that she shares with others.

After noticing her resilience and a more positive outlook, her current dermatologist approached her with the idea of sharing her experiences with other patients. To help others living with atopic dermatitis and raise awareness about the disease, África helped found the first atopic dermatitis advocacy group in Spain, la Asociación de Afectados por la Dermatitis Atópica (the Association of People Affected by Atopic Dermatitis, or AADA).

She learned that many people had similar experiences as hers, though they had all felt alone at one point because of the disease. She also became excited as her awareness grew about the continued research in atopic dermatitis. Now, one way she helps other people living with atopic dermatitis is by giving them advice on how to build trust with their doctors.

África coaches patients to share their true, agony-ridden experiences with their doctors. And preparation is key in these discussions, she says, suggesting that patients take pictures to document their atopic dermatitis.

She also speaks with doctors to encourage them to ask about patients’ daily lives, look patients in the eye and reassure patients that they are going to work together. By working with both doctors and patients, she’s helping build more trusting relationships and create opportunities for meaningful conversations.

“It’s important that patients and doctors work together,” África says. “As a patient, when you feel that you’re on the same page with your doctor, then you go home and really want to follow through on your care plan.”

A friendly face

África’s steps toward pursuing a management plan that was right for her didn’t just give her confidence to look herself in the mirror – it gave her confidence to face the world. She funneled her newfound energy into acting, eventually appearing in popular television shows in Spain.

Now, instead of being afraid to leave her room, she’s so visible that people in the streets will greet her by the names of her TV characters.

And it’s all because she started asking for help with her atopic dermatitis, which led her to focus on improving her mental health, such as practicing relaxation techniques. She attributes her success in managing her disease today to her family’s encouragement, finding a dermatologist that listened to her, and learning to not quit.

“Don’t ever give up on yourself,” África says. “No matter what, keep fighting.”
 

References

  1. Nutten, S. Atopic Dermatitis: Global Epidemiology and Risk Factors. Ann Nutr Metab. 2015;66 Suppl 1:8-16. doi: 10.1159/000370220. Epub 2015 Apr 24.
  2. University of Michigan Medicine. Atopic Dermatitis (Eczema). 2020. Available at: https://www.uofmhealth.org/health-library/hw216104#hw216107. Accessed on June 11, 2020.
  3. Weidinger, S., Beck, L.A., Bieber, T. et al. Atopic dermatitis. Nat Rev Dis Primers 4, 1 (2018). https://doi.org/10.1038/s41572-018-0001-z.
  4. EFA. Atopic Eczema: Itching for Life Report. 2018. Available at: https://www.efanet.org/images/2018/EN_-_Itching_for_life_Quality_of_Life_and_costs_for_people_with_severe_atopic_eczema_in_Europe_.pdf. Accessed on June 11, 2020.

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Annie Claggett
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