Newly Diagnosed
Navigating Scarring Alopecia with a Community That Understands
If you have been recently diagnosed with scarring alopecia, you might be feeling uncertain and have many questions. It's completely natural to feel this way. SAF is a beacon of hope and support for those newly diagnosed with scarring alopecia. We understand that receiving this diagnosis can be overwhelming, and our mission is to provide you with the resources, information, and the community you need to navigate this journey.
Understand Your Diagnosis
A scalp biopsy is vital for diagnosing scarring alopecia by providing an accurate diagnosis and pinpointing the specific type of scarring alopecia, which is essential for tailoring treatment approaches. It can also reveal the extent of inflammation around hair follicles, a key characteristic of scarring alopecia, and assist in understanding the degree of scarring and follicle damage, which helps dermatologists gauge the severity of the condition. This detailed information guides the development of personalized treatment plans and provides insights into the disease's progression, aiding in decisions about treatment urgency and intensity.
Find a Knowledgeable Dermatologist
There are many unknowns that accompany a scarring alopecia diagnosis, and finding a knowledgeable dermatologist can be incredibly reassuring. Scarring alopecia is a very personal issue and having a good rapport and trusting relationship with your treating physician will help very much. SAF provides a physician referral listing of dermatologists who specialize in hair loss disorders and scarring alopecia.
Educate Yourself
Explore the wealth of resources on our website, including SAF’s online educational library and webinars hosted by physicians. Knowledge enables you to make informed decisions about your treatment options, alternative therapies, lifestyle modifications, and so much more. Learning as much as you can plays a significant role in making your healthcare decisions, communicating with your doctors, and being your own best advocate.
Expand your Circle of Support
Remember that you won't always feel this way—it does get better. Living with scarring alopecia can be a very private experience, and sometimes you may feel isolated, embarrassed, or frustrated. Join SAF’s monthly online support group meetups where patients share their experiences, seek advice, and find emotional support. You can also connect with one of our patient outreach volunteers to speak directly one-on-one with veteran, qualified patients who are long-standing members of SAF.
Stay Informed
Staying engaged with SAF is essential for being informed and supported. We consistently provide information on all things related to scarring alopecia, from the latest research updates to details about upcoming events and clinical trials. You'll also find inspiring stories from others who have faced similar challenges. Sign up for email updates and our e-newsletter to receive the latest news directly in your inbox. Follow SAF on social media to stay updated on the go. Your journey with scarring alopecia is unique, and with SAF, you’re never alone.
Journey To Acceptance
We recognize that living with scarring alopecia can bring unique challenges that extend beyond medical aspects and deeply impact emotional well-being. The journey to self-acceptance can be difficult, and it’s normal to experience feelings of anxiety, fear, shame, grief, and self-doubt. In today’s world, where societal pressures can be intense, this journey can be particularly challenging. SAF believes that with the right support, encouragement, and resources, these challenges can be managed, leading to a happy, rich, and fulfilling life. Here is an evolving collection of resources that includes a journaling module and a therapy resource sheet designed to help patients through this process, centered around the theme - know that you won’t always feel this way; it does get better.