Cicatricial alopecia is a very personal issue and having a good rapport and trusting relationship with your treating physician will help very much.

Tips for finding a doctor

If you live near a teaching hospital, or university hospital, you can contact their dermatology department and inquire if they offer or know of a hair disorder clinic. Doctors who run these clinics are interested in hair disorders and usually very willing to meet new patients.

You can also look for a dermatologist on your own in your local area. It’s important to remember that you have the right to “interview” and ask questions before you choose a dermatologist or schedule an appointment. Don’t be discouraged if you don’t find the right doctor at first. It may take two or three appointments before finding the right doctor. Cicatricial alopecia is a very personal issue and having a good rapport and trusting relationship with your treating physician will help very much.

Here are some helpful tips and questions to ask that will help guide you in the process and narrow your search.
  •  Are you familiar with cicatricial alopecia?
  • Do you treat any patients with scarring alopecia in your practice?
  • How do you diagnose scarring alopecia? Biopsy? Pull test?
  • How often and at what intervals do you do follow up appointments?
  • Do you look at the whole scalp?
  • Do you use a dermatoscope?
  • Do you take serial pictures?
  • Do you take computerized pictures - that we can both view on a screen?
  • A day or two before your appointment ask your hair stylist or a trusted friend to look at your scalp and give a detailed description. If it's bad news, you'll have time to adjust emotionally before your appointment. It's better to be upset at home than in your doctor's office.
  • Write a list of questions and bring it with you.
  • Provide a list of vitamins, supplements, OTC items, medications plus your health and cicatricial alopecia history.
  • Bring someone who is a good listener and ask him/her to take notes.
  • When the doctor prescribes a medication, be sure to ask if a generic prescription would be available/acceptable.
  • Your insurance coverage could limit you to one specialist visit. If so, ask your doctor if they would be willing to communicate with your local dermatologist about treatments.
  • During your appointment stay as positive as possible. Your doctor will appreciate it.

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What to ask your doctor
So, you’ve finally scheduled an appointment with a hair disorder specialist. Educate yourself as much as possible beforehand. The CARF website is a wonderful resource with abundant information on both the clinical and emotional aspects of cicatricial alopecia.

Educate yourself as much as possible

Leave any preconceptions at home.  Be open-minded and remember this is a learning experience.

Try to limit the number of people who go to the appointment. This will help with concentration and focus and ensure that you cover all your areas of concern. The more relaxed you can remain, the more effective the visit will be.

Discuss the situation with your spouse or other family members who will not be at the doctor visit. Write a list of their questions, as well as your own, and bring it with you.

Write a summary, journaling what your experience has been since you first became aware of symptoms. Record any information you have that help form a whole picture for the physician, including symptoms, concerns, and specifically how cicatricial alopecia is affecting your lifestyle. Writing it down may also take some of the emotion out of the story, so you can remain focused.

Bring all blood test results, physician reports, photographs, skin biopsy reports and the slides —basically anything that has been medically recorded.

Always remember there is a difference in what you read on the internet, and what the average experience might be. Often the internet is filled with “worst case scenario” stories. At your visit, discuss the things that you have seen or heard that may be scary or alarming. Your doctor will be able to discern medical fact from hype and sensationalism, and provide more supportive stories, people and resources.

Most importantly, don’t hold back on discussing anything that comes to mind, particularly issues that have made you uncomfortable. This visit is an opportunity to educate yourself and to give yourself peace of mind.

Here are some basic questions to help keep you focused when discussing your treatment:
  • What is the primary type of infiltrate (cell) involved in my disease process?
  • What topical medications would help me the most?
  • What oral medications might help me the most?
  • What are the goals of my treatment?
  • How rapidly do you see my condition progressing?
  • How often should I come back to see you?
  • How quickly do you think we can get the disease process under control?
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