水疱性疾病专科门诊 概述

Shannon Piche, Pharm.D., Clinical Pharmacist: I think it's very isolating to feel like you're the only person that you know, or the only person in your community that has a specific condition. And so to come to a place where it's like, "No, we care for hundreds of these patients a year," and "We know what you're going through," and "We know how we can help support you," is a pretty awesome thing.

Julie S. Lehman, M.D., Dermatologist: Immunobullous diseases are a category of disease where there is an autoimmune reaction against the skin. Basically, that autoimmune reaction attacks the glue that holds the skin together. They will often develop blisters or erosions or ulcerations, which can be very painful. Either on the skin or even on the mucosal surfaces as well, such as the mouth, in the eye, and the throat, for example.

Michael J. Camilleri, M.D., Dermatologist: Autoimmune blistering disorders can pretty much affect your everyday life. Pain and itching are bothersome symptoms. And also, because [the disorder] involves the skin, many times in exposed areas of the skin, like the arms and sometimes the face, there will be the stigma of the appearance of their skin. And therefore, they would find it very hard to socialize because of that reason.

Dr. Lehman: Each patient with immunobullous disease has a slightly different variant. Each person is an individual. So I think it's important that we tailor their care. One of the really unique resources we have here at Mayo Clinic is that we have a world-class Immunodermatology Laboratory. So that means that we can do testing on patients who have immunobullous diseases that are not straightforward. That [testing] is not available anywhere else in the country. And so that allows us to give answers in terms of diagnosis, which then allows us to pick the right treatments for those patients.

Dr. Piche: When you come to Mayo [Clinic], you still have a rare condition, but you're one of a few more at least. The providers that are caring for you have years and years of caring for this specific type of illness. And you're in a specialty clinic that literally is focused on you. It's also a place where we're going to understand you as a human, we're going to hear your journey.

Dr. Camilleri: The value of managing these disorders at Mayo Clinic is the multidisciplinary approach, which is all in one place. A lot of times in local communities, dermatologists themselves are not very familiar with these disorders. So Mayo [Clinic] has that advantage, the expertise of diagnosing and coming up with a treatment plan.

Dr. Lehman: One of the very important parts of our care experience having patients here is that we make the transition back home as seamless as possible. So to do that, we enjoy partnering with their home providers, discussing their care. Coming up with the best treatment plan that's both practical and feasible for the patient, and also, of course, [we're] engaging the patient in those decisions as well.

Dr. Camilleri: The most satisfying situation that I have with these types of patients is when they've come back to me and said, "You saved my life" or "I feel like my symptoms are gone." We're always here to support them. It's part of the Mayo [Clinic] philosophy.

Dr. Piche: What I hope that a patient feels is that we hear them, we understand them, we see their journey.

Dr. Lehman: Everyone has a single mission in mind, and that is that the needs of the patient come first. And I think that's really palpable when you come to Mayo Clinic. It's something very unique, and it drives every decision we make.

(bright music)

水疱疾病专科门诊的专家经验丰富,可帮助患者应对与免疫系统功能障碍相关的皮肤和黏膜反应。这些状况可被称为自身免疫性皮肤黏膜疱病。

第一步是准确诊断

您的就诊可能包括诊断检查,例如活检和特殊血液检查。免疫皮肤病学实验室是我们的皮肤科医生使用的诊断资源之一,实验室专科医生可解读您的活检和血液检查结果,从而帮助及时、准确地做出诊断。该团队还专门研究开发新的检查方法,以提升妙佑医疗国际对水疱病患者的护理。

全方位治疗方案

医生会与您一起制定满足您需求的全面治疗计划,并考虑每种治疗方案可能产生的副作用。医护团队会对您进行随访,以监测您对治疗的反应。

可治疗的疾病

  • 大疱性类天疱疮
  • 类天疱疮的变体。
  • 大疱性表皮松解症。
  • 大疱性系统性红斑狼疮。
  • 线性 IgA 大疱性皮肤病。
  • 疱疹样皮炎。
  • 寻常型天疱疮。
  • 落叶型天疱疮。
  • 其他天疱疮变体(红斑型天疱疮、疱疹样天疱疮、增值型天疱疮、IgA 天疱疮)。
  • 副肿瘤自身免疫多器官综合征(也称为副肿瘤性天疱疮)

积极的临床研究

该团队积极参与与水疱病有关的临床研究中。

联系信息

亚利桑那州

  • Blistering Diseases Clinic
  • Mayo Clinic
  • 13400 E. Shea Blvd.
    Scottsdale, AZ 85259
  • 电话:480-301-8484

佛罗里达州

  • Blistering Diseases Clinic
  • Mayo Clinic
  • 4500 San Pablo Road
    Jacksonville, FL 32224
  • 电话:904-953-0853

明尼苏达州

  • Blistering Diseases Clinic
  • Mayo Clinic
  • 200 First St. SW
    Rochester, MN 55905
  • 电话:507-538-3270
Aug. 28, 2024