Why is it so important to create awareness about cicatricial alopecia? Because cicatricial alopecia is basically unknown and unfortunately, a little understood group of permanent hair loss conditions.
Awareness starts with a diagnosis. For some people, they will listen and embrace options for management of their condition. They will learn as much as they can about the disease. They will make decisions to not allow this condition to interfere with their self-confidence.
There are others who will receive the diagnosis and then choose only to share their diagnosis with a loved one. They will find the diagnosis very difficult and life-changing. It will be hard to comprehend that they have a condition that has no known cause, treatment or cure. They will struggle with defining their new appearance, and possibly become self-conscious and wonder what people are thinking. They will keep their secret close to themselves.
Most people think of hair loss as something that just happens to men. When it happens in women, people often think it’s related to hormones, stress or an illness. The assumption is that the hair will grow back. They never realize that this rare hair loss condition is painful, isolating and can lead to permanent hair loss.
The irony of keeping this secret is that for those who can share their story, speak from the heart, and educate the community around them, don’t. We need that to change. Throughout CARF’s history, there have only been a small core of members who have been willing to share their diagnosis and journey of challenges and successes. Many, many thanks to these pioneers for they have paved the way for others to follow suit.
So, let’s educate the world one member-at-a-time! If you are self-conscious or feel vulnerable, remember that sharing your story can be one of the best ways to build your self-confidence. Reach out through CARF to other members who have shared their story for advice and courage. Bring your bestie with you when you first open about your condition in a public setting. They can be your support system.
Or be bold! Consider hosting a fundraiser for CARF, like a restaurant night or fun event where you have a captive audience. Help people understand that cicatricial alopecia is not “just hair loss.” Encourage them to think about their worst hair day, and then remind them how that is every day for you. It will become very real and relatable.
Spreading awareness creates interest. With interest, we can move the needle. We can raise the much-needed money for research, better treatments, and a deeper understanding of why this happens and how to prevent it.
We may be small, but we are MIGHTY. Go forth and educate! The CARF office is available with resources, connections and ideas for your personal awareness campaign. Call them today!