My first hint of a hair loss problem was as a baby. This was according to my mother's account. She said that I was born with no hair because of some medication she had to take while she was pregnant with me. She said her younger brother who was six years old at the time contracted meningitis and she was prescribed sulfur tablets to protect me from acquiring the disease. I remained bald until I was about 3 years old after which I grew hair and had nice long ponytails throughout my young age and through my teenage years. 

 

At around aged 13 I noticed small patches of missing hair in random places on my body. They resembled circles and were the size of dimes. They showed up on my scalp at the very top of my head, in my under-arm hair and around my pubic area. The patches came and went quietly, no pain, no itching and I never mentioned it to anyone. I just assumed this happened to every girl my age. I camouflaged the patches on my head easily with popular hairstyles which at that time were big wild afros and ethnic styles like cornrow braids. The missing hair under the arms and pubic area wasn't an issue for me. I was young and not dating so no one had to see those areas but me. 

 

By the time I turned 16 years of age I became pregnant with my first daughter and my hair grew a lot from all the baby hormones just like any other pregnant woman. Then about six months or so after giving birth to my beautiful daughter by c-section, I noticed I had lost all of my pubic hair. I assumed it was because of the c-section incision that the hair loss happened. Again, I said nothing to anyone. I noticed the dime sized patches were back under my underarms and this time they showed up with hard pus and lumps that were sore and painful. Once the lumps burst, it took the hairs with them and the hairs never grew back in those places. This time I sought medical attention. I was told I had seborrhea. That red, itchy rash on your scalp that has flaky scales could be seborrheic dermatitis or seborrhea. It's a common skin disease that looks similar to psoriasis, eczema, or an allergic reaction. And it can appear on your body as well as your scalp. I was perscribed these awful smelling shampoos that turned my hair to the texture of steel wool and smelly cremes that would drive any man far away from his wife. I accepted the diagnosis and stayed busy being a new mom.

 

 

A few years past and at age 20.  I was married and had my second beautiful baby girl. Again, the hair loss patches showed up and this time with a vengeance!

This time the patches on my scalp were the size of quarters and they were itching, stinging, bleeding and my hair started to shed. I assumed it was because of not only seborrhea but because of the many perms and chemical coloring I had done to my hair. I continued to use the medications and tried all kinds of concoctions to try and offset the damage the chemicals had done to my hair. I also noticed a change in my nails. They had become dry and brittle. They had these ridges in them. I assumed that was from my baby hormones making my body crazy. The hair came back, the itching and burning was gone,  but this time the texture was different. It was thin but I was able to cover it up with weaves and extensions. Life was back to normal.

 

Four years later another beautiful baby girl and the patches came back. This time, they showed up in the back of my head, near my neck. My hair was shoulder length, so I just wore my hair down to cover those patches up. The hair never grew back in those areas. There was no itching, no burning, just missing hair.

 

Fast-forward to the year 1995. I was 34 years old. It was one of the worst days of my life. I was involved in a very bad car accident. I was hit by an SUV truck while on foot. I went flying into the air and landed on the concrete ground. I ended up with a fractured face, lost teeth, severely injured my knees which resulted in having them both replaced. I was in a wheelchair and endured rehabilitation for three years. I took lots of medications including steroids and suffered unthinkable pain. My hair came out in clumps. Then a very large patch showed up on the right side. I looked and felt horrible. I remember going to bed that night thinking I really needed to consider buying a wig to my list of things to do. 

 

I woke up the next morning and found a large blood stain on my pillow that came from the large patch of missing hair on the right side of my head. I called my doctor that morning who referred me to a dermatologist. I visited the dermatologist who performed a biopsy on the first visit. When the results came back, my doctor told me I had something call Lichen planopilaris . Wait, what?

 

Lichen Planopilaris-info was below taken from National Center for Advancing Translational Sciences

 

"Lichen planopilaris is a form of lichen planus that mainly affects the scalp and primarily affects middle-aged women.[1] LPP can be subdivided into 3 variants: classic LPP, frontal fibrosing alopecia (FFA), and Lassueur Graham-Little Piccardi syndrome. It usually causes tiny red pimples (papules) to appear around a cluster of hairs. Rarely, blistering occurs in the lesions. The disease affects mostly the hair follicles, although lesions may also be found on the skin and mucous membranes. Common signs and symptoms are increased hair shedding, itching, scaling, burning, and tenderness. Hair loss may be permanent if the disease causes permanent scarring (cicatricial alopecia).[1][2] Treatment is usually with steroids, accutane or hydroxychloroquine. Hair transplant may be effective in some cases.[1][3]"

 

Symptoms 

"The Human Phenotype Ontology (HPO) provides the following list of features that have been reported in people with this condition. Much of the information in the HPO comes from Orphanet, a European rare disease database. If available, the list includes a rough estimate of how common a feature is (its frequency). Frequencies are based on a specific study and may not be representative of all studies. You can use the MedlinePlus Medical Dictionary for definitions of the terms below."

 

Signs and Symptoms

Alopecia

Hyperkeratosis

Lichenification

Papule

Abnormality of the fingernails

Dermal atrophy

Pruritus

Skin ulcer

Abnormal blistering of the skin

Abnormality of the intestine

 

 

 

It was all downhill from here. 

 

Over the next few years, I lost all the rest of the hair from my body and there were very large areas of hair missing from my hairline in the front of my head, the very top of my head and on the right side of the head. I continued to add hair by gluing, clipping, sewing, braiding in fake hair to cover up the balding. I creatively wore headbands and hair ornaments that consisted of ornate combs, flowers, and scrunchies. When all else failed, I simply covered my entire head with scarves and hats. I made them all look like fashion statements all coordinating my outfits for work, casual outings and special occasions. No one knew the dirty little secret I was hiding underneath my headgear and my clothes except me and my husband of course. 

 

I remember this being a very dark and depressing time for me. My weight had ballooned to almost --

300 lbs, I walked with a limp, my parents died at the same time and I was going bald. Surely the baldness was from all of those things. And then there was the little matter of the car accident. You see my husband was the one driving the SUV truck that fateful day I was hit in the driveway. So you see my marriage was in deep trouble. I was in trouble.

 

Two more years went by and the hair patches got larger and larger. I began to heal from the accident, moved to a new house, began to heal from my parents' deaths, sent the girls off to college. I barely had a marriage and I was overwhelmed in my career which was involved working as a website developer and computer support person at a law firm. 

 

My hair loss solution consisted of microbraids. I found this wonderfully talented woman who knew how to cover every inch of my scalp with those fake braids. I spent an exorbitant amount of money and time getting those braids done. I suffered through those tight braids with headaches and redness. I remember taking pain medicine and drinking lots of wine to ease the pain. I didn't care. It was all worth it, just as long as I had a full head of hair by the time I left her salon.

 

It was also at this time I had decided on another life-altering decision. Feeling fat, depleted, defeated, unwanted and confused, I decided to have gastric bypass surgery to lose all the weight I had gained. Don't get me wrong, I certainly was a good candidate for the surgery with all the health problems I had, it just that I had other issues psychologically, mentally, and spiritually that were not good reasons to have the surgery. 

 

Why am I telling you all of this???

 

Studies have shown that people who have alopecia have somehow been predisposed to a trick gene. That trick gene, they are born with it. And it can sit dormant for years. It is said that the gene gets turned on like a switch when a person with this gene experiences some sort of trauma or major life event. Do you see the pattern here? Each time I had a child, the patches showed up. After the car accident,...so forth and so on.

 

So I left off at the gastric bypass surgery. I lost 147 lbs right away, then another 60lbs. I went from an overweight woman in a wheelchair to a skinny anorexic woman. All that was left to finish the job was to finally leave my husband. It was officially over. 

 

I fell into what I thought was just a deep depression. It wasn't. I had completely spiraled out of control and had to be hospitalized. I felt so out of control. This wasn't my life. How did I get here? The devil wasn't done with me yet. 

 

I was diagnosed with Major depressive disorder, Post Traumatic Stress Disorder, and Generalized Anxiety Disorder. I was a complete mess. Medical treatment was in order and that's what had to happen. Then it was back to work I go!

 

The day came when I had to prepare for work. I had to get my hair done. I called my hair stylist. I will never forget that day. When I came to visit her I had my extensions in from my last visit. She had to remove them to treat my hair and scalp, then braid the hair. and sew new extensions in the braids.

 

As she started to remove the extensions, I noticed she was very quiet, then I heard her gasp. She asked me,"What happened?"

 

I was in shock. I honestly didn't know what she was talking about. she handed me a large hand mirror. I saw that the whole right side of my hair was completely gone! My real hair was still attached to the fake hair in some areas. I wanted to cry. The salon was full of other customers so I was so embarrassed! I had to go in the back room of the salon to gain my composure. 

 

My stylist came in the back room to console me and took an assessment of the situation. She ensured me that she could try a method of braiding the fake hair into the remaining natural hair while providing coverage and maintaining a nice hairstyle. After calming down, she proceeded to finish and needless to say, the hairstyle looked beautiful. The hairstyle looked beautiful, but I felt awful. I felt like such a fake! In addition, I kept thinking, what would I find the next time my stylist removes my hair? I made my next appointment for a month from that day. I would never make that appointment.

 

I made it back to work and seemed to be adjusting after my separation. I began to gain a little weight back and began to adjust to my new home. Life was getting better. I got home from work that day and looked around my home and thought to myself, "everything is going to be alright now.". I gathered up my other thoughts of the day and prepared for my work day tomorrow. Finally, it was time to rest. My bed was calling me and I answered. I fell fast asleep.

 

The alarm went off just like any other workday morning at 5:00 a.m. My coffee was waiting for me in the kitchen. I staggered into the kitchen and prepared for my first sip of coffee. I turned on my morning news, got a few more sips of coffee and prepared for my morning shower. 

 

When I got into the shower my hair felt heavy on my shoulders, more heavy than usual. I thought it was just me. Maybe I needed to wake all the way up. Then I looked down and saw long strands of hair on my ankles and feet. I literally watched hair running down the bottom of the tub and going down the drain! I grabbed my head, thinking my weave and extensions had come undone. As I touched my head, my head and shoulders began to feel less and less weight. I began to panic and the hair became entangled between my fingers! I jumped out of the shower and ran to the mirror. I lifted my braids that should have been attached to my scalp. They were completely detached from my scalp with the fake hair still sewn into them. I screamed, "Oh, My God!" What is happening!" I lightly pulled and the rest of my hair came out! I had one little patch near my left ear! That was all that was left. There was hair in the tub, in the sink, on the bathroom floor in my towel, stuck to my body! Oh my God! Am I dying? What's wrong! 

 

I called my doctor immediately and called out of work that day. My doctor advised me to visit a dermatologist. I was lucky. I had already made an appointment after the salon debacle, so my doctor was able to see me later that afternoon. 

 

I called family member after family member, crying, shaking, not knowing why this happened. I googled all kinds of things but everything seemed a blur and didn't make sense. It was June of 2007. Most of the information on the internet about alopecia at that time were medical research papers and journals what consisted of case studies that sounded nothing like my situation. The information contained a lot of medical jargon that made no sense to me. I felt overwhelmed and even more in a panic. I remember my sister telling me that I needed to try and calm down. I remember drinking wine and pacing the floor until it was time to leave for my doctor's appointment.  

 

I arrived at my doctor's appointment with bloodshot eyes from crying and buzzed from drinking all that wine. It felt like a long time before I got to see the doctor. And then a sense of calmness came over me. I thought it will be OK. The doctor will give me some medication and it will fix everything. My hair will grow back and everything will be back to normal. That definitely was not the case.

 

 

 

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