Alopecia Hope Blog

I know there are many reasons for hair loss and alopecia is just one of them. I see clients weekly who are losing their hair due to alopecia (AA, AT, and AU), chemo, radiation, cancer, other dermatological causes, other auto immune deficiencies, and other reasons beyond medical labeling. Some will say they have been told stress caused it, some will say a traumatic experience caused it, and others simply don't know but begin looking into genetics. I still don't know what really caused mine. What I do know is that it happened. I know that after I went through many many tests and no results came from those tests I was told I had alopecia. When it was diagnosed in me (33 years ago) they still related my condition to male pattern baldness which today they classify as different things. The Doctors felt that the many drugs I had to take to keep me alive as a very sick child didn't show all their effects in my body until my teens which some medications do. The Doctors also felt that since my Mother and Grandmother had "male patterned baldness" that it was something I was genetically predisposed to getting. My condition was just stimulated earlier than theirs. However, the Doctors did not have any "solutions". I felt very alone, filled with shame, and frightened.

My "reason" for my hair loss may be different from yours, but the life changing result is the same. The result is a change of life for those of us facing the challenge of hair loss. It is also a change of life that affects those that love us whether it be a spouse, a significant other, a family, our friends, or all of the above. 33 years ago there were not a lot of solutions. I tried anything and everything people suggested. Wig shops were out in public so MANY could see me trying on different hair. I was crushed and felt humiliated each time I would go to try on a new wig.

What I have found through my experience is that the stages of grieving do not just apply when we lose someone we love. They also apply every time we experience a loss, from the "simplest" things (like missing a phone call) to the "complex" things (like missing our loved ones). When I started seeing my hair loss as a huge loss in my life, I started seeing myself as going through the grieving process with that loss.

Probably the most well-known of author about grief might be Elizabeth Kubler-Ross. Her book, "On Death and Dying" identified five stages of grief in terminal patients.
The stages Kubler-Ross identified are:
Denial (this isn't happening to me!)
Anger (why is this happening to me?)
Bargaining (I promise I'll be a better person if...)
Depression (I don't care anymore)
Acceptance (I'm ready for whatever comes).

I know have gone through each of the stages she describes concerning my hair loss. Somehow being able to put a name on it made sense. I also learned that just because I have gone through all the stages doesn't mean I won't go through them again and again. We can go through the stages rapidly especially for "simple" things (like not being able to attend a game due to a rain out). However, I have found the more "complex" our loss, the longer the process takes. Some grief experts say that when we face a death, it can take two years to go through the entire grieving process.

Sometimes I feel a bit like an onion! I feel like layers of myself have been peeled away only to find that there are more layers. An example of this is I have a little dachshund. He is a sweetie, is 11 years old, is "red" in color, and is my "baby". I know that probably sounds a little absurd, but I could not have children, so he really is like my child. His name is Worf. He has been recently diagnosed with cushings disease and the prognosis is not great for him. Everything I read states that once dogs are diagnosed with this they usually only live about 2 more years. To make things more complicated he is also diabetic and on 9 units of insulin twice a day. Unfortunately the combination of diabetes and cushings is not good because he needs insulin due to the diabetes yet the cushings causes the body to produce such high amounts or cortisol in his body which makes him insulin resistant causing his insulin need to be increased more often than other diabetics.

When Worf was diagnosed with cushings syndrome three weeks ago, my heart broke. I went through the denial (no this can't be), the anger (why is this happening to such a sweet little fella, I don't want to lose him), the bargaining (maybe if I do something different this will go away), the depression (rather than the I don't care emotion Kubler Ross describes I go through a deep sadness and missing him already), and then I'll work my way through to acceptance (he is here with me, I can't change things, so I'll make the best of this as long as I can and keep him as comfortable as possible for as long as I can).

Although my emotions have worked through these stages (and the stages are not something you can force, they simply will happen), I find myself going back through the depression and acceptance. Apparently this is a "normal" process described by many authors who deal with grief.

I used the example with Worf as a stepping stone to say that I have also gone through all these stages with my hair loss. Hair loss is a big loss. All of my life I have heard "hair makes a person", " hair is our crowning glory", "hair is the person", etc. Seeing my hair fall out was so traumatic and challenged the very core of my being. Learning about the stages of grieving helped me to identify what I was going through. I know I have gone through all of these stages at least once concerning my hair loss. However, as each new day presents itself I find that I may still have something to deal with in a previous stage. Yet the stages don't last as long concerning my hair loss. Each time I identify where I am, I then am able to deal with the acceptance better. I seem to be freer to enjoy my acceptance.

Don't get me wrong, I don't think the stages are easy. I don't think they go quickly when we experience a new loss. However, I do think they are helpful to be aware of when we have a loss so we may identify where we are, know where we are is "normal", and once we get to the acceptance stage no matter how brief... to celebrate the acceptance.

Sometimes I celebrate my acceptance by giving thanks, other times by having a wonderful cup of coffee, sometimes by sharing with a friend or writing in my journal, other times I'll celebrate with a new wig or a new head band or something fun that can fit into my budget.

I would love to hear from you about where you are and if you agree about the grieving process and hair loss.

Hairs to you,
Gina

www.thewomenshop.com

Posted by Gina Smudski at 10:03 PM | Permalink | Comments (1) | TrackBacks (0)

I was reading an old issue (January 2005 issue to be exact) of the Magazine called "DaySpa". The title of the article was "Gaining On Hair Loss" by J Elaine Spear. This article stated that:"More than 90 million people in the US have thinning hair." It went further to state that "more than 30 million of these follicle-challenged folks are women, according to the Women's Institute for Fine and Thinning Hair."

The article pointed out "Even though a man may feel devastated about hair loss, being bald is socially all right for men," However, "the same isn't true for a woman. A bald, sexy Pamela Anderson? I don't think so! So much emphasis and value are placed on a woman's crowning glory that it's hard to even compare the impact hair loss has on them with its effect on men."

The article sited that "A 1999 study published in the Journal of women's Health and Gender Based Medicine confirms that female hair loss is associated with self-consciousness, jealousy and feeling of powerlessness about the conditions. These feelings are so commonplace that many psychologists now refer to them as ravenously envy. A study reported by the Academy of Dermatology also suggests that women with hair loss have a higher incidence of letting hair loss interfere with their daily lives."

A couple of years ago I researched the number of women in the state of NC with tumors of any kind who faced the challenge of hair loss. That number at that time was 40,000 women in that one year. I found this information with the Tumor Board at Duke University Medical Center.

I share this information because I know how devastating hair loss can be. It doesn't really matter if the hair loss is "temporary" caused by catalysts like chemotherapy, radiation, stress or drug interactions; or if it is "permanent" from scenarios like alopecia, brain surgery leaving the follicles dead in that one area, or other autoimmune deficiencies, The end result leaves us having to go through the grieving process, and realizing that life is really more than about hair.

I know I still go though denial, anger, and acceptance in cycles as part of the grieving process. However with wonderful hair solutions out there, we can choose not to allow our hair or lack of it be a distraction. Once we begin to accept that we are OK with or without hair we are heading in the healing direction. That choice is not easy, but it can be done. We can lead full lives with the help of natural looking, hand made, hand sewn wigs, and hats, and turbans, scarves, and other accessories. We can accentuate the positive... our eyes, our neckline, our cheek bones, our lips, and look in the mirror and tell ourselves that we are loved JUST the way we are.

I so admire the many women out there that I have the opportunity to meet who are so comfortable with who they are they don't need wigs or prosthesis. But, I can't say I am there yet. I am more comfortable at this point in my life letting people know I have alopecia areata and sharing with them how I might be able to help them in some small way concerning their own hair loss.

My Dad used to always tell me that "You can't tell a book by it's cover". I used to get so upset because I felt so left out, so full of shame, and unable to get over my own loss. Yet today his words still ring true to me. I have met so many wonderful people. Yet if I would have stopped at the "cover", I would have been the one missing out on someone totally awesome who touched my life deeply.

No, I don't walk up to people on the street and say I can help you, but I do let people know that I have lost my hair, with the hope that I can help them through the grieving process as well.

I think the good news is that we are not alone. We don't have to feel like the lone ranger. There are many others out there exactly like us (90M to be exact, 30M women).

Help is out there for the asking, and as Martha Stewart says "It is a good thing"!

Hairs to you!
Gina

Posted by Gina Smudski at 10:04 PM | Permalink | Comments (1) | TrackBacks (0)

Some sites that I have found to offer some great support and/or chat areas are http://groups.msn.com/WigSupport. This site has a support group you can join as well as a lot of information on purchasing the right wig. Another great support group that I have joined is alopeciaareatasupportgroup@yahoogroups.com. There have been some great people there as well who are experiencing hair loss due to alopecia.

I'm searching for other sites as well and will let you know what I find.

Hairs to you,

Gina

Posted by Gina Smudski at 10:06 PM | Permalink | TrackBacks (0)

Did you know that more that 30 million women in the US in any one year live with the challenge of hair loss? This was according to statistics I found back at the end of 2002. I know I felt very alone when I found that I was losing my hair. Today I meet many people who must face the challenge of hair loss. Some do so gracefully, some do so in denial, some do so with humor, some do so with dignity, some do so with anger, some do so in peace, and some do it with all I've mentioned depending on thngs going on in their life.

Out of my personal experiences, research, trials, tribulations, and finally a peaceful acceptance I knew I wanted to help others who must face living life with the challenges of hair loss. I knew I wanted to help others if only in some small way to avoid some of the experiences I had. So.. here I am. I offer some wonderful hair solutions, wigs, prosthesis, and accessories so it won't take you 30+ years to at peace exactly where you are.

Being a source of help and support to my clients are the reason I opened my shoppe. However, I want to be sure I stay on top of what people with hairloss are looking for, what they need, and most importantly what things would make their visit complete (such as a free newsletter, free tips, etc).

If anyone has suggestions of what they are looking for, what they want but can't find anywhere, stories to share, encouraging words, bits of real life laughter, or words of inspiration I would love for you to share. The reason for your hair loss may be alopecia (areata, totalis, or universalis), drug interactions, chemo, radiation, cancer, brain tumor, dermatological conditions, or whatever you have found that caused your hair loss. I would be so grateful if you would share with me your story, your interests, your hobbies, and anything else you would like to share. And if you are one of the brave ones who is very comfortable being bald and beautiful please share your what got you to that place. I admire so many people who are facing this challenge because it is exactly that... a challenge. We are different, but once we decide to be who we are, we find we are just fine the way we are. As I have been told it isn't life's challenges that are hard... they are hard only when we perceive the challenges to be hard.

Go ahead... please share with me!!

Hairs to You,

Gina

Posted by Gina Smudski at 10:07 PM | Permalink | TrackBacks (0)

Dating was always a fear in my heart. When my hair first started coming out I knew I was very different from other students in my high school. Although that was years ago, I can still remember the feelings I had, the "questioning, silent" looks of others, the "longing to help" looks from my family and close friends, and my fears that I would never really be a woman if I had no hair.

By the time I graduated from high school I had been through every treatment possible to bring back my hair. At that point, I was determined to go off to college and live without wearing wigs. For some reason I had a fear that if people found out that I wore wigs they would think less of me. Little did I realize that women did a lot of things to enhance their beauty which were not "their things". I remember finding out that others wore false eyelashes, false boobs, false nails, fake tans, false butts, and more; yet my hair felt more profound to me. I felt I was being more fake if I wore a wig than others who chose to simply "enhance their beauty" by wearing the false things they wore.

My college roommate to this day teases me because she says "You dated more guys in college than any one I know." I was very committed to keeping my virginity yet playing the field. I wanted to meet people and see different sides to life. However, deep within I was very afraid people were judging me because of my hair ... or lack of it. I didn't want my dates to touch my head because if one hair moved from any point ... I was afraid it looked even thinner. I wore scarves and hats and turbans and they would playfully get pulled off of my head which would totally embarrase me. However, I'd "play" along as if nothing had happened.

Once I started wearing wigs, I then became afraid they would blow off in the wind (and they did) or afraid someone would pull them off my head (which also happened usually quite by accident). I didn't want my dates to touch my head or my wig for fear they would think less of me once they knew I wore a wig. Of course at that time I truly felt that I was very alone in my struggles. I had no idea that 30 million women a year live with the challenge of hair loss (either from alopecia, dermatologcial causes, drug interactions, cancer, etc) . My doctors did not even know of any support groups that I could be a part of. Unfortunately this confirmed my feelings that I was alone.

When I met my husband I had been wearing wigs for a while. He and I had been friends for several months when I decided I really needed to tell him about my hair. We were attending a church at that time and were both part of a singles group in the church. The singles group was planning a beach trip. We both planned to go. Dread filled me because I knew I needed to tell him and other girls I was rooming with before we got to the beach. It took me weeks to build up the courage to tell each of them before we went down to the coast.

Fear consumed me because I knew how special my then friend boy was to me and that when I shared my hair condition with him, he could very well choose not to see me any longer. The same fear came when I thought about the women as well. I had experienced the rejection in my past because of my hair so I felt almost paralyzed. The thought of not going on the trip was entertained. Yet, I had always pushed myself to do the things that I enjoyed.

When I did share my hair condition with all the singles going on the trip, I found an entire group of people who did not think any differently of me. They were supportive and encouraging. My then friend boy who is now my husband had a lot of compassion. What I learned from that moment in my life was that I would start my relationships out with the simple truth. I didn't plan on wearing a sign or shouting it from roof tops, but as conversations presented themselves I shared about alopecia.

Another thing occurred as well. Quite innocently and most unplanned I became a resource for others facing the challenge of hair loss. Today I work with people facing this same challenge and am available to speak to support groups, Dr's offices, cancer support, alopecia support, and I volunteer my time when I am able for children facing hair loss. As things have worked out, my Mother now lives with my husband and I. My Mother is a 3 year breast cancer survivor. Little did I know what an impact my being a resource would also have in that community.

Let's face it... losing your hair for any reason is traumatic. It is life changing and is not easy. However, when people realize they are not alone and that there are some beautiful solutions out there whether they choose hats, scarves, wigs, hand made prosthesis, or going au naturale it is all OK.

Accepting myself was one of the hardest challenges for me to overcome. I had to look myself in the mirror and know in my heart that it was OK if I didn't have much hair (at times no hair). The person I chose to become was inside. Sure people might have to look a little harder for what was on the inside ... but it's there. A friend of mine says I have the perfect romance story to tell, not just about my husband and I; but one that they called "When Harry (hairy) met Gina" and they labeled the story a romance that lasts a life time. "When Harry met Gina" would become a love story about loving myself and my hair whether I am wearing a wig or letting "it all hang out".

Hairs to You and finding your own true love story of "When Harry met ________" (fill in your name).

Gina

Posted by Gina Smudski at 10:08 PM | Permalink | TrackBacks (0)

In the shower after washing my hair I noticed what seemed to be a huge amount of hair on the drain. My thoughts were "this must be normal", "this HAS to be normal"! Reflecting back over the previous months I recalled all the hair on my pillow each morning and the comments my older brother (11 years older than I) had made. He had mentioned to my parents that something was really wrong. Since he no longer lived at home, he didn't see me everyday making the impact much greater on him. Overhearing his conversation, I began to weep. Thoughts were running through my head. "This can NOT be happening to me." My hair was dark, long, thick yet fine, with soft natural curls. I could sit on my hair.

My mind raced back to being a small child when I had been very sick. Starting at the age of 4 I was in an out of the hospital due to severe allergies and upper respiratory complications. There were months I would spend in an oxygen tent (what I called my bubble) in Duke Hospital. By the age of 8, I no longer had to continually live in a "bubble". By the age of 12, all the Doctors said I out grew everything and should have a normal life.

Now I stared in the mirror at myself wondering what was happening to my hair. I spent a lot of time in denial (no not the river in Egypt). Surely this hair loss had to be normal, but when I no longer had hair on my head.....there was nothing to deny.

I was angry, sad, ashamed, and was not sure where to turn. My parents took me to many doctors to make sure there was not a blood disease, thyroid problem, systemic issue, dermatological condition, or any other disease. I remember going through tests too numerous to count. After the tests had been exhausted, family remedies had been tried, and cosmotologists were consulted the Doctors concluded that I had "male pattern baldness"/"alopecia". Their diagnosis as to the reason this happened was possibly the medications I had been on as a child caused this "thing" called "alopecia". The Doctors all said that the medications stimulated this condition that I was genetically predisposed to at an early age. They all felt the condition was permanent. Walking out of one of the countless Dr offices, I began to shake my head. I knew I could beat this. I knew this couldn't be happening to me. I knew my hair was going to come back. I was not even sure what "alopecia" was so surely it could not be a permanent condition!

Three years later my hair came back. I knew the Doctors had been wrong. I had my crown and glory back. Unfortunately, my head full of hair was short lived. Most but not all of it came ou again. I tried EVERY trick in the book. My desparation came back. If something said it would grow hair I did it, ate it, drank it, or swallowed it. Dermatologists tried topical steroids that they "tatooed" into my head. Some people said if I put vodka on my head my hair would grow. Others said if I drank vodka it would grow. I even asked to be part of one of the original "rograin" studies at Duke University in Durham, NC but the clinic turned down my application stating my hair loss was too diffuse. The doctors doing the rograin study felt that the amount of topical rograin they would have to use could potentially harm my liver.

I was completely shattered. I was humiliated. I was afraid. I felt hopeless and alone. During this time I was so afraid to be around people because I was the only young female I knew (and the ONLY one that anyone I knew, knew) who had "alopecia areata". I was alone and it appeared that no one could help me find a solution. Many dollars were spent on wigs, hats, scarves, creams, pills, magic solutions, doctors, cosmotologists, and more. Nothing worked.

Getting out in public was very hard for me. However, if I "pretended" I wasn' t any different then I could make it though my days, parties, college, volunteer efforts, holidays, jobs, and life. People would show their compassion to me in the best way they knew how. Yet statements or questions like "I am so sorry you have cancer" or "did you know you are losing you hair?", or "my mother had thin hair and she tried such and such and her hair returned." While their compassion was intended for all the right reasons I would gratefully and humbly go home and cry.

When people started looking at my head more than my eyes when speaking to me, I began my search for what I will call a good "wig". The "wigs" I found were not inexpensive and were very uncomfortable, contibuted to my migraines, had a lot of stitching in them that itched me like crazy, and they could be easily blown off my head in a strong wind or unintentionally pulled off by another person. I can't begin to tell you how much time and money I spent trying either to get my hair back or find wigs I liked. I tried "Racquel Welch wigs", "Dolly Parton wigs", and more. However I discovered that the wigs I was trying were more for people with hair who wanted a change rather for people without hair with sensitive skin. I wore the uncomfortable wigs without security because I could not find other options.

I studied alopecia, the best I could not being a doctor or pharmacologist. My personal findings were that alopecia was a fancy word for hair loss. When doctors's tests eliminated all other possible causes they give the hair loss a name called "alopecia". I had no idea that I had alopecia areata which is basically male patterned baldness. I learned later in life that others have alopecia totalis (no hair on their head) or alopecia universalis (no hair on their entire body). I searched and researched for 25 years and was FINALLY able to find what I call "cranial prosthesis" that were comfortable, hand sewn, hand tied, beautiful, natural looking hair for my head.

I tried the luxurious vacuum type prosthesis. However, I found that for me (since I still have some hair) the vacuum type didn't work well for me. Making the purchase for a vacuum prosthesis was a huge decision for my husband and me. Don't get me wrong, my husband was very supportive. He chose to marry me knowing I had very little hair. He could see the person within. Yet seeing beyond my hairloss was becoming more and more difficult for me. I chose to shave my head (not that I had to shave a lot) so the professional could make a cast of my head. Once I shaved my head, I had to live that way for many months, since my hair grew sparcely and slowly. The vacuum piece took over 7 months to arrive. When it arrived it seemed to weigh a ton. The cap is solid latex or silicone. The price (about 7 years ago) was around $6k. I had to shave my head again to wear this prosthesis but it was never comfortable for me because it was heavy, thick, and didn't breath at all. This type of prosthesis stayed on my head very well. The hair was gorgeous. It looked very natural even pulled back off of my face. I just was not thrilled with having to shave my head constantly for the vacuum to work. I also was not happy with the fact that it did not breathe which made me very hot. The mere weight of the prothesis contributed to my migraines (which started when I was 12). This prosthesis was a beauty (still is) and from time to time I wear it (mostly in the winter). I have met several people that use these and love them because they lead very active lives. They like to water ski, snow ski, swim, etc and the vacuum piece will NOT come off of their head. This type provides solid security for active people.

I researched hair grafts. These were quite costly and required surgery. I was afraid to go down that path because my immune system has never been the best. I was afraid of complications that could arise out of this procedure for me. I know others who have had it done and absolutely love it. The pattern I observed for those who loved the hair grafts process were people who had smaller areas of hair loss. My area of hair loss is not localized to just one area, it is wide spread on my head.

Still searching for what was best for me, I finally found some light weight, hand tied, human hair, beautiful prosthesis that have turned out perfect for me and my lifestyle. Of course, NOTHING will EVER feel like or replace naturally growing hair. All cranial prosthesis will have to be replaced regardless of how well you take care of them. I have found that having two prosthesis extends the life of each one and gives me a back up when I am washing the other one. I have chosen to use shampoos, conditioners, and spritzes that extend the life of the prosthesis. However, my prosthesis still have to be replaced because they will wear out. None of the cranial prosthesis, wigs, or extensions last forever.

Once I found the hair/cranial prosthesis I liked I found myself with another problem. Now that I have this hair, what do I do with it. When I placed them on my head, I looked like cousin "IT" from the Adamms Family. I went in search for cosmotologists who could cut and style my hair/wig/prosthesis. This was a large challege for me. Many cosmotologists, and rightly so, are afraid to work on expensive prosthesis/hair because they won't grow back. One wrong cut and the hair is ruined...forever. I felt like a kid with a prize balloon in my hand that popped. Here I had an awesome thing and couldn't find anyone to work on it. Now what was I to do.

Today, I own and operate a Shoppe so I can help others who are facing the challenge of hair loss for any reason. KNOW you are not alone. KNOW there are wonderful hair loss solutions. KNOW this is one area of your life that you can do something wonderful about. KNOW there is someone who sincerely cares about what you are dealing with because I live with it just like you.

If you or someone you know is experiencing hair loss for any reason, I would love to hear your story. Together,we an be an inspiration to others as well.

Hairs to You,

Gina

Posted by Gina Smudski at 10:09 PM | Permalink | Comments (1) | TrackBacks (0)