YVONNE - fd

Around 2009, like most people with scarring alopecia, it came out of nowhere.
Over the years, a small spot on my scalp turned into an open wound that would NOT
heal. There were times when itching and burning were almost unbearable. It felt like
my head was on fire!

Over the years, my journey led me to 5 different dermatologists, 3
different infectious disease doctors, and the Wound Clinic. My procedures and
treatments have included several scalp biopsies, shavings, an array of various
antibiotics, and topical ointments. All my biopsies always came back as staph. Any
healing always cycled back to square one. My wound grew, became more infected and
painful. I traveled three and a half hours to Barnes Hospital, in St. Louis, one of the top
research hospitals in Missouri. There were still no answers, just more antibiotics and
ointments to try to keep the staph infection at bay. After fifteen years, my condition was
finally diagnosed in 2024. I was told that I had a very rare form of scarring alopecia
called Folliculitis Decalvans (FD). I learned there is no known cause nor no known cure.
The only hope was that it could be “managed.” Due to constant cycling, I started
developing a bald spot on the crown of my head which has grown to about 4 inches
wide. The extreme burning and itching continued.

When my doctors in Springfield could not help me, I tried to get into the Mayo
Clinic for a consultation. I was rejected as they had nothing else to offer other than the
treatments I was receiving locally. If Mayo could not help me, who could? This was a
turning point for me. I realized it was up to ME to find answers and relief. I had to be my
OWN advocate. I again contacted Barnes Hospital in my search for a specialist who
treats others with my condition. During the year-long wait for my appointment, I
received care from my local dermatologist. My condition had never improved. In the
meantime, I constantly searched the internet for case studies, other treatment methods,
and information. I found such information at the Cleveland Clinic, printed it off, and took
it to my dermatologist. Treatments were added without providing any improvement. My
dermatologist admitted that she was unable to help me. She had never seen anything
like this before.

In December of 2024, I ran across a website that truly changed my life. The
Scarring Alopecia Foundation (www.scarringalopecia.org) offered wonderful medical
resources, ZOOM support group meetings, patient outreach, and so much more. I
requested a copy of their Physician Referral List. I quickly scanned it, looking for
someone close to me. There was only one in Missouri… Dr. Carolyn Mann, at Barnes
Hospital! She is a dermatologist/hair loss specialist/researcher and has a hair loss
clinic. I requested a referral to her and have been her patient ever since!

What really caught my eye was that SAF was having a conference in Nashville,
in April 2025. I was really drawn to the possibilities I might find there! The top
dermatologists and researchers from across the United States, were going to be there,
offering their expertise on; advanced treatment methods, camouflage, question/answer
sessions, emotional support, along with networking with others. I did not register right
away. As the deadline approached SAF’s emails kept repeating, “We Need You!” I
happily registered! Then, I reached out to SAF asking for a Patient Outreach Volunteer
to contact me.

My “new best friend,” Marilyn Ey, called me. We talked for about 2 hours! She
listened, intently to my story, offered suggestions to help ease my symptoms, and asked
if I was going to Nashville. She told me to be ready for a big hug, when we finally got to
meet. Most importantly, she said, “You are not alone, anymore.” I finally found my
people.

When my husband and I arrived at the conference, my expectations were sky-
high! I told my family that I just wanted to rip my headband off, approach the doctors,
and say, “PLEASE look at my head!” Unfortunately, we were told that we would be
unable to do so, due to the number of patients (over 100) and limited time. The
sessions were very informative, but due to its rarity I was not hearing much about FD.
During the Advanced Treatments session, we learned about such things as JAK
inhibitors, which are showing promise. JAK inhibitors are drugs that suppress the auto-
immune system. Scarring Alopecia IS auto-immune! That’s what is causing my itching
and burning! Itching is inflammation. Inflammation helps destroy hair follicles. This
information was so promising, but nothing was tied to FD. Anytime there was a
question/answer session, I approached the microphone, out of desperation. Somebody
please help me!

That night at dinner, the doctor who answered my JAK inhibitor question sat next
to me. She provided more information and suggested trying Humira. I apologized for
“hogging” the microphone, and she understood my feelings of exasperation. Then, two
ladies sat across from me. They were two of the top dermatologists in the country. They
approached me, asking questions about my head. I showed them pictures in my phone.
Then, they asked if they could look at my scalp! This WAS NOT supposed to happen!
My dream came true! I took my headband off and cried. They suggested that I get
another biopsy as they thought I was “on the spectrum.” Being “on the spectrum” meant
that I not only had FD, but LPP (Lichen Planopilaris) also. The FD/LPP syndrome is
even more rare! I learned FD (neutrophilic form) morphed into and then became the
LPP (lymphocytic) form. The doctors were SO kind and caring! They even gave me
their phone numbers! I was ecstatic!

The next morning, I could not wait to tell Marilyn about my encounter with
experts. We hugged each other and cried. Other new friends came up to me asking,
“Was that you with the two doctors looking at your head?” It was so nice to be
surrounded by other patients who were experiencing the same symptoms and
understood the importance of just being together! Going to the conference was a true
Godsend for me. It happened at a time when I really needed help. On the last day of
the conference, we were given blank paper luggage tags and were told to write down
something that we were “leaving in Nashville” because we don’t need it anymore. The
weekend was so emotional, so I wrote:
“I am leaving frustration in Nashville because NOW I have HOPE!”
WE are not alone anymore. We have a wonderful and caring scarring alopecia family to
lean on and learn from. Attending the SAF Conference was a life-changing experience
that I will never forget!

At my next appointment with Dr. Mann, a new biopsy confirmed what the doctors
told me in Nashville. I am on the FD/LPP Spectrum! At my appointment she asked,
“What do you think about trying a JAK inhibitor?” My ears perked up, and I told her that
we just learned about those in Nashville! She was so excited to hear that I went to the
conference! She gave me 2 free sample boxes of Rinvoq (upadacitinib) to try. Since it
is NOT FDA approved for scarring alopecia, I took it, “off label.” I had to get blood
drawn and a tuberculosis test before I could start. Luckily, I had no problems taking this
medication! When I went back to see her, she looked at my head, got the biggest smile,
and with wide eyes, she kept repeating, “It worked, it worked, it worked!!!” The
inflammation was gone!

She gave me four more months of Rinvoq. In the meantime, I was returning to
my local dermatologist for monthly cortisone injections, around the perimeter of my bald
spot, along with taking oral Minoxidil (to encourage hair growth). She also commented
on how well my scalp had healed! I went back to see Dr. Mann in January for another
follow-up. She thoroughly examined my scalp and saw no signs of inflammation,
scaling, or infection! She only saw healthy scar tissues! Two other dermatologists were
also in the room, at the time. One had never seen FD and was anxious to observe what
was happening. Dr. Mann looked at me, saying, “We are going to make you famous!”
She asked me about signing releases for the use of my pictures and medical
information for submission to the Journal of the American Academy of Dermatology! I
have always hoped to be a part of a case study. Only time will tell if Rinvoq will be FDA
approved for scarring alopecia. I can only hope and pray that there will be enough data
gathered from other case studies, that this will be an option for the scarring alopecia
community.

Scarring alopecia is not a “one size fits all” type of disease. A treatment that
helps one patient may or may not work for another. Patients must wait and see their
responses to various treatments. I recently chose to stop taking Rinvoq to see if the
symptoms return. Stay tuned and keep your fingers crossed!

February 7, 2026
Yvonne Heath