Adrienne B. – FFA/LPP

You are not crazy.  If you see hair thinning or falling out, then you’re probably right that something is wrong.

My story is probably much like most of yours.  I started noticing hair thinning at age 66.  I wasn’t overly concerned since I always had a full head of hair. I asked my hair stylist what she thought, and she said that’s typical of women my age.

Strangely, I wasn’t seeing clumps of hair falling out or abnormal shedding but clearly my temporal hairline and sideburn area were receding; my eyebrows were thinning; and my body hair had already disappeared.   So much for the joy of not having to shave my legs and arm pits.

Being a person of action, I made an appointment with my dermatologist.  As luck would have it, I got to the right person at the right time.  My dermatologist, Dr. Laurel Morton at SkinCare Physicians in Chestnut Hill, had done her residency with Dr. Lynne Goldberg, one of the country’s leading researchers in hair loss.  Dr. Morton agreed something was going on and insisted that Dr. Goldberg read my biopsy.  I can’t stress enough that finding the right doctors is the key to getting on the right track.  I hear of too many missteps and lost years, frustration and depression, in people’s quest to find the answers.

Although the biopsy was inconclusive, Dr. Morton prescribed Clobetasol, Minoxidil and Doxycycline.

I was freaking out.  I realized that my hair was my shield against the world. It was part of my self-image.  As a Leo, it was my mane.  I was queen of the jungle.

I surfed the Internet and found CARF and was referred to a volunteer in Colorado.  The volunteer patiently explained the disease and all drugs that people were trying.  Honestly, I was even more confused and depressed. FFA and LPP were letters in the alphabet and I didn’t know where to turn for comfort and advice.  I quickly joined the amazing group of people going through what I was going through on the Facebook page – Let’s Put out the Fire.

My research did not stop there.  I was on the wait list to see Dr. Lynne Goldberg at Boston City Hospital and Dr. Maryanne Senna at Mass General Hospital.  In addition, I went to New York City and was seen by Dr. Jerry Shapiro at NYU Langone Medical Center who concurred with the biopsy and the drugs that I was taking. Little did I know at the time that all three amazing physicians are actively involved with CARF.

Fast forward four years.

Yes, I still freak out and have bouts of depression and sleepless nights, but I know in my heart of hearts, I am doing everything humanly possible to find answers. I stay on the forefront of all new protocols like PRP (Platelet Rich Plasma injections), micro-needling, and new medications.

Most importantly, I am open about my condition in hopes that I can help someone else.

My Journey. Steps to Finding the Truth.

Listen to your gut.  You are not crazy.  If you see hair thinning or falling out, then you’re probably right that something is wrong.  Your hairdresser or your family might not be honest with you when you ask them what they think.  Don’t waste valuable time waiting to confirm what you think and feel.

Look for the signs.  Loss of body hair, receding temporal hairline and sideburns, protruding veins and hyperpigmentation in the temporal area are telltale signs that something is happening.  Symptoms are not necessarily lots of shedding or obvious bald spots.  Have you noticed your scalp is itching?  Then, it’s time to find out what’s going on.

Take to the Internet.  Normally, I would say this might not be best idea, but you need to start somewhere.  At this stage, you are floundering and don’t know where to turn for guidance. Fortunately, I found CARF – a dedicated team armed with the latest information and providers.

Don’t take NO for an answer.  Your internist or dermatologist might not know anything about hair disease.  Find a doctor through CARF that you can trust.  I was fortunate being in Boston with great doctors specializing in the field.

Get a biopsy.  Before you go down a slippery slope of conjectures or false diagnoses, find out the truth.  Make sure you find a reputable doctor to read your biopsy and identify the type of hair loss.

Take action.  Get several opinions.  I booked several appointments with different doctors since the waiting lists were so long to see one of them.  Go out of your city, if you don’t have a provider that is a specialist.   I saw four specialists – three in Boston and one in NYC.

Lean on others. The Facebook group “Let’s Put Out the Fire” was a lifesaver.   Here are people in the same boat as you are.  Look for a support group in your city.  We are lucky to have one in Boston.

Follow your regimen.  Don’t do Minoxidil when you feel like it.  Take your meds religiously.   Right now, I’m on Clobetasol twice per week, Doxy when I get a flare-up, Spironolactone and Finasteride daily. I have also had four rounds of Platelet Rich Plasma (PRP).

Share. Share. Share. Whether you’ve tried the laser cap, micro-needling, a special diet, vitamin, medication, or PRP, please share your experiences with the CARF community.  Everyone is on the frontline of helping each other.

Be there.  Volunteer to be that voice of reason when a fellow sufferer is feeling hopeless.  We all need to lean on each other.  Losing your hair is not a vanity issue; it’s a physical and mental health issue.

Donate:  So many studies are trying to get off the ground but cannot be funded.  CARF can provide this information or ask your doctor how you can help.

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