被困在自己的皮肤

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
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\r\nSevere 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.
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\r\nWhen 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.
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\r\n“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.”
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\r\nAt 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.
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\r\n"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.”

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人们可能会认为他们了解过敏性皮肤炎,非洲说,但大多数不明白如何使人衰弱的疾病。过敏性皮炎,也称为湿疹,是一种慢性炎症状态,它会导致痛苦的皮疹和渗出,血腥的皮肤。¹中度到重度特应性皮炎的皮肤覆盖更大的区域,引发了频繁和剧烈的瘙痒和抓挠的循环。²

严重的过敏性皮炎困扰非洲因为她还很年轻。当她还是个婴儿时,她的父母注意到她的腿由于出血的伤口在她干燥的皮肤。他们带她去皮肤科医生诊断她的病。

在她还是少女的时候,非洲的疾病会变得如此严重,这是痛苦的坐,躺下睡觉,甚至穿衣服。手指的皮肤非常干燥,关闭她的手让她流血。她觉得她的整个身体是一个开放的伤口。

“发痒是如此之深,感觉就像在我的骨头,“非洲补充道。“你想刮伤和划痕,这是远远不够的。”

有一次,她很为她的外表感到羞愧,她不想让她的父母看到她。当她关上门护理。经过多年的新的医生和护理程序但没有改变她的条件,她确信,没有什么可以为她做的。

“当我看到医生,我开始哭,我说,“我很抱歉,因为我知道没有什么可以做对我来说,“非洲说。”但之后第一次皮肤科医生告诉我,你不需要接受你的生活是如何。我们可以试着改变它。我瞪大了眼睛,当我注意到一些变化。”

Today, after a lifetime of fighting atopic dermatitis, África has a wealth of experience and lessons learned that she shares with others.
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\r\nAfter 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).
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\r\nShe 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.
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\r\nÁfrica 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.
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\r\nShe 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.
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\r\n“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.”

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今天,特应性皮炎一生的战斗之后,非洲有着丰富的经验和教训,她与别人分享。

注意到她的坚韧性和更积极的前景后,她目前的皮肤科医生走近她的想法与其他病人分享她的经验。帮助别人生活在特应性皮炎和提高对该病认识的,非洲帮助建立第一个特异反应性皮炎游说团体在西班牙,la Asociacion de Afectados关于皮炎Atopica(特应性皮炎患者的协会或AADA)。

她知道很多人有类似的经历,她的,虽然他们都感到孤独因为疾病的。她也变得激动,因为意识增长的持续研究过敏性皮肤炎。现在,她帮助别人生活方式与特应性皮炎是给他们建议如何建立信任和他们的医生。

非洲教练病人分享他们真实,agony-ridden经历与他们的医生。在这些讨论和准备是关键,她说,这表明特应性皮炎患者拍照记录。

她还说医生鼓励他们询问病人的日常生活,看患者的眼睛,安抚病人,他们要一起工作。通过与医生和病人,她是帮助建立更多的信任关系和创造有意义的对话的机会。

“重要的是病人和医生一起工作,”非洲说。“作为一个病人,当你觉得你在同一页和你的医生,然后你回家,真的想兑现你的护理方案。”

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.
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\r\nNow, 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.
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\r\nAnd 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.
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\r\n“Don’t ever give up on yourself,” África says. “No matter what, keep fighting.”

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非洲对追求管理计划的步骤是正确的为她不只是给她信心看镜子中的自己——这给了她信心来面对这个世界。她注入新能量,最终在西班牙出现在受欢迎的电视节目。

现在,而不是害怕离开她的房间,她很明显,人们在街上会迎接她的名字她的电视人物。

这都是因为她开始寻求帮助过敏性皮肤炎,导致她专注于改善心理健康,比如练习放松技巧。她认为她的成功管理她的病今天家人的鼓励下,找到一个皮肤科医生,听取她的意见,和学习不放弃。

“永远不要放弃自己,”非洲说。“无论如何,继续战斗。”