Alopecia World
www.alopeciaworld.com
Victim or survivor?
I have to admit it. I am a victim.
Now, just think about that statement for a moment. What was the FIRST thing that went through your mind when you read that opening statement? Did you think that I had befallen some unknown tragedy, calamity, or disaster? Did you immediately want to wrap me in arms of sympathy, words of comfort, and prayers for survival?
At any point, did you associate my self-label as a victim to my alopecia?
If you did, then you see the same problem that I did.
When I was diagnosed with alopecia in 1982, NAAF was a local support group somewhere in California that was barely a year old and not even on anyone's radar outside of California. Every doctor my parents took me to, from the Navy doctors on post to the finest medical minds that Meharry Medical College, Centennial Medical Center, and Vanderbilt University have to offer the nation and the world, couldn't identify how alopecia worked, why it worked, or why - of every single family member I have, immediate and extened for at least six generations - I was the only one to hit the hair loss lottery. Yay me!
I don't think that a child as young as 4 years old knows how to feel sorry for themselves, let alone cast themselves in the role of victim. I think that a child only does what she knows to do best, which is adapt to the situation. It is only from the body language of those around her, the words said and left unsaid, and the actions of family and friends that the child learns how to see herself. If these behaviors suggest to a child that everything will be just fine, then of course, everything will be just fine, and life goes on. However, what happens when the environment and support models designed to help someone so young adjust to such a nasty little shock do more harm than the disease which has so drastically altered said child's life?
Because NAAF was only in California, and was a local effort at best with no real intentions or foothold in the South, as far as my family was concerned, it didn't exist. Therefore, we created our own support system of doctors willing to try established and experimental treatments, counselors to help me to understand why I didn't look like everyone else and why everyone else didn't like it, pastors and clergy to help with the spiritual questions that come with something so life-altering, and of course, Mommy and Daddy reassuring me that I was beautiful no matter what. Alongside that though, as I grew up with failed treatment after failed treatment, I also noticed that our family approach to alopecia wasn't altogether different than the approach used when my grandmother was diagnosed with lupus, or any when any other catastrophe befell our family. We did our homework. We researched the issue. Asked questions and got answers. If we didn't like the answers we got, we kept asking them. We held the medical personnel treating us accountable for everything they said to us and every drug prescribed. And if something didn't work again, we had a dialogue and planned our next action. Somewhere in the midst of all that, I grew up. I went to college. I became a cheerleader. I had boyfriends. I traveled the country. I joined a sorority. And I entered the workplace. And somewhere in the midst of all of that, alopecia went on the back burner, never totally out of sight, but never totally off my mind either. There were times when my hair grew back totally; other times, it only grew back partially. Eventually, the people who loved me the most and supported me the most passed on from this world, but their lessons remain with me. And I never stopped fighting what was wrong, because let's face it, alopecia is wrong. This is not how my body was designed to look. It is just as wrong as being obese or having hair that won't stop growing anywhere. Sorry to burst the "acceptance" bubble, but it's the truth. It's not.
Enter NAAF into the picture some 25 years later. Now, NAAF, according to its own website, is "widely regarded as the largest, most influential and most representative foundation associated with alopecia areata." At first, I got very excited when started reading about NAAF. Look at what they do! Look at all of these people with alopecia! They all look so happy! The first thing I wanted to do was ask questions about what had been accomplished in the medical field since my lapse in keeping up, which had increased to several years by this point. I found about about the NAAF Conference and eagerly made plans to attend my first conference. And then I saw their "Ask the Experts" panel. Every year, NAAF asks the same panelists to come to their conference and update the alopecian public on what is being done "on their behalf" to fight this disease. I started reading the transcripts. And then I started noticing a pattern: The same people were asking the same questions year in and year out, and the responses to the questions were exactly the same: "We don't know what causes alopecia. We are hopeful that one day we will find out. And even though there are all these treatments out there, we can't guarantee that one or all of them will work for you. We can't even guarantee that your hair will stay should you stop the treatments. Oh and by the way, if you are a child with alopecia and become an adult with alopecia, there is a 1 in 5 chance that any child you have may have alopecia too. But we'll see you next year! Maybe we'll have a different answer for you, but probably won't."
Whoa!!! Stop!!! Do you mean to tell me that for all the money you raise, and the grant money you get from the National Institutes of Health, that you don't know any more about this thing in 2010 than you did in 1982?? And you expect me to be happy about this???
And then there are the support sessions and support groups. I tried those as a child, and they didn't work for me then any better than they work for me now. Why, might you ask? Because for every one person like me who, for whatever you accredit it to, lived their lives in spite of alopecia, there were 5 more who stopped living because of it. People who stopped working, went into hiding, isolated themselves, allowed themselves to be shut out of all of the things that make life exciting and enjoyable and worth living. There were some who even had attempted to end their lives, all because a single component of who they are happened to be missing. After a few of those sessions, I noticed that I myself felt down all the time; I noticed all the flaws about me rather than the attributes - and I began to blame it on the alopecia. Because the alopecia was the one thing that was constant throughout all of this, I thought that maybe I should just accept it and find a way to muddle along, just like everyone else. You see, the current support model of education/awareness/acceptance that I was buying into didn't have the one thing that I had been doing all along, and that NAAF frowns upon anyone other than themselves doing unless it's along THEIR guidelines:
ADVOCACY. Giving a voice to the voiceless, and holding the ones responsible for helping to heal us in the medical community accountable for their action, or lack thereof.
Once I recognized this missing piece, I started looking at other support groups and models for other issues. Sexual abuse victims, domestic abuse victims, cancer patients, lupus patients, people with real, sometimes debilitating physical and mental disabilities. Each and every one of these other support models for these conditions has the same thing in common: Not only do they push for awareness, education, and acceptance, but when the advocacy piece is added, the mindset it totally different. The model becomes something like this: AWARENESS that such a condition exists - and it sucks; EDUCATION so that everyone knows why it exists and why it is so important to the people affected; and ACCEPTANCE that yes, it happened - but it doesn't mean that you stop living because this horrible thing happened to you. Finally, once you are aware that a condition that you were educated about happened to someone you care about, you OPEN YOUR MOUTH and become an advocate for someone who may not necessarily be able to speak for themselves - and you make sure it DOESN'T HAPPEN AGAIN!! It is only because of this advocacy/accountability mentality that the progress has been made in cancer research, Alzheimer's research, lupus research, etc.
This leads me to my point to consider for today. According to the dictionary, a victim is "a person who suffers from a destructive or injurious action or agency; or a person who is deceived or cheated, as by his or her own emotions or ignorance, by the dishonesty of others, or by some impersonal agent." By contrast, a survivor is "a person who continues to function or prosper in spite of opposition, hardship, or setbacks." Based upon these definitions, I think that the current model for alopecia support, as established by NAAF, is one of creating and perpetuating victims. I think that there should be an alternative model established; one that pushes us to demand a cure and no doubt shakes many of us from our comfort zones in doing so, intends to make survivors out of all of us, and it's one that echoes my own individual efforts over the years.
After reading this post, let me ask you: are you a victim or a survivor?
Now, just think about that statement for a moment. What was the FIRST thing that went through your mind when you read that opening statement? Did you think that I had befallen some unknown tragedy, calamity, or disaster? Did you immediately want to wrap me in arms of sympathy, words of comfort, and prayers for survival?
At any point, did you associate my self-label as a victim to my alopecia?
If you did, then you see the same problem that I did.
When I was diagnosed with alopecia in 1982, NAAF was a local support group somewhere in California that was barely a year old and not even on anyone's radar outside of California. Every doctor my parents took me to, from the Navy doctors on post to the finest medical minds that Meharry Medical College, Centennial Medical Center, and Vanderbilt University have to offer the nation and the world, couldn't identify how alopecia worked, why it worked, or why - of every single family member I have, immediate and extened for at least six generations - I was the only one to hit the hair loss lottery. Yay me!
I don't think that a child as young as 4 years old knows how to feel sorry for themselves, let alone cast themselves in the role of victim. I think that a child only does what she knows to do best, which is adapt to the situation. It is only from the body language of those around her, the words said and left unsaid, and the actions of family and friends that the child learns how to see herself. If these behaviors suggest to a child that everything will be just fine, then of course, everything will be just fine, and life goes on. However, what happens when the environment and support models designed to help someone so young adjust to such a nasty little shock do more harm than the disease which has so drastically altered said child's life?
Because NAAF was only in California, and was a local effort at best with no real intentions or foothold in the South, as far as my family was concerned, it didn't exist. Therefore, we created our own support system of doctors willing to try established and experimental treatments, counselors to help me to understand why I didn't look like everyone else and why everyone else didn't like it, pastors and clergy to help with the spiritual questions that come with something so life-altering, and of course, Mommy and Daddy reassuring me that I was beautiful no matter what. Alongside that though, as I grew up with failed treatment after failed treatment, I also noticed that our family approach to alopecia wasn't altogether different than the approach used when my grandmother was diagnosed with lupus, or any when any other catastrophe befell our family. We did our homework. We researched the issue. Asked questions and got answers. If we didn't like the answers we got, we kept asking them. We held the medical personnel treating us accountable for everything they said to us and every drug prescribed. And if something didn't work again, we had a dialogue and planned our next action. Somewhere in the midst of all that, I grew up. I went to college. I became a cheerleader. I had boyfriends. I traveled the country. I joined a sorority. And I entered the workplace. And somewhere in the midst of all of that, alopecia went on the back burner, never totally out of sight, but never totally off my mind either. There were times when my hair grew back totally; other times, it only grew back partially. Eventually, the people who loved me the most and supported me the most passed on from this world, but their lessons remain with me. And I never stopped fighting what was wrong, because let's face it, alopecia is wrong. This is not how my body was designed to look. It is just as wrong as being obese or having hair that won't stop growing anywhere. Sorry to burst the "acceptance" bubble, but it's the truth. It's not.
Enter NAAF into the picture some 25 years later. Now, NAAF, according to its own website, is "widely regarded as the largest, most influential and most representative foundation associated with alopecia areata." At first, I got very excited when started reading about NAAF. Look at what they do! Look at all of these people with alopecia! They all look so happy! The first thing I wanted to do was ask questions about what had been accomplished in the medical field since my lapse in keeping up, which had increased to several years by this point. I found about about the NAAF Conference and eagerly made plans to attend my first conference. And then I saw their "Ask the Experts" panel. Every year, NAAF asks the same panelists to come to their conference and update the alopecian public on what is being done "on their behalf" to fight this disease. I started reading the transcripts. And then I started noticing a pattern: The same people were asking the same questions year in and year out, and the responses to the questions were exactly the same: "We don't know what causes alopecia. We are hopeful that one day we will find out. And even though there are all these treatments out there, we can't guarantee that one or all of them will work for you. We can't even guarantee that your hair will stay should you stop the treatments. Oh and by the way, if you are a child with alopecia and become an adult with alopecia, there is a 1 in 5 chance that any child you have may have alopecia too. But we'll see you next year! Maybe we'll have a different answer for you, but probably won't."
Whoa!!! Stop!!! Do you mean to tell me that for all the money you raise, and the grant money you get from the National Institutes of Health, that you don't know any more about this thing in 2010 than you did in 1982?? And you expect me to be happy about this???
And then there are the support sessions and support groups. I tried those as a child, and they didn't work for me then any better than they work for me now. Why, might you ask? Because for every one person like me who, for whatever you accredit it to, lived their lives in spite of alopecia, there were 5 more who stopped living because of it. People who stopped working, went into hiding, isolated themselves, allowed themselves to be shut out of all of the things that make life exciting and enjoyable and worth living. There were some who even had attempted to end their lives, all because a single component of who they are happened to be missing. After a few of those sessions, I noticed that I myself felt down all the time; I noticed all the flaws about me rather than the attributes - and I began to blame it on the alopecia. Because the alopecia was the one thing that was constant throughout all of this, I thought that maybe I should just accept it and find a way to muddle along, just like everyone else. You see, the current support model of education/awareness/acceptance that I was buying into didn't have the one thing that I had been doing all along, and that NAAF frowns upon anyone other than themselves doing unless it's along THEIR guidelines:
ADVOCACY. Giving a voice to the voiceless, and holding the ones responsible for helping to heal us in the medical community accountable for their action, or lack thereof.
Once I recognized this missing piece, I started looking at other support groups and models for other issues. Sexual abuse victims, domestic abuse victims, cancer patients, lupus patients, people with real, sometimes debilitating physical and mental disabilities. Each and every one of these other support models for these conditions has the same thing in common: Not only do they push for awareness, education, and acceptance, but when the advocacy piece is added, the mindset it totally different. The model becomes something like this: AWARENESS that such a condition exists - and it sucks; EDUCATION so that everyone knows why it exists and why it is so important to the people affected; and ACCEPTANCE that yes, it happened - but it doesn't mean that you stop living because this horrible thing happened to you. Finally, once you are aware that a condition that you were educated about happened to someone you care about, you OPEN YOUR MOUTH and become an advocate for someone who may not necessarily be able to speak for themselves - and you make sure it DOESN'T HAPPEN AGAIN!! It is only because of this advocacy/accountability mentality that the progress has been made in cancer research, Alzheimer's research, lupus research, etc.
This leads me to my point to consider for today. According to the dictionary, a victim is "a person who suffers from a destructive or injurious action or agency; or a person who is deceived or cheated, as by his or her own emotions or ignorance, by the dishonesty of others, or by some impersonal agent." By contrast, a survivor is "a person who continues to function or prosper in spite of opposition, hardship, or setbacks." Based upon these definitions, I think that the current model for alopecia support, as established by NAAF, is one of creating and perpetuating victims. I think that there should be an alternative model established; one that pushes us to demand a cure and no doubt shakes many of us from our comfort zones in doing so, intends to make survivors out of all of us, and it's one that echoes my own individual efforts over the years.
After reading this post, let me ask you: are you a victim or a survivor?
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Comment by Tallgirl on June 17, 2011 at 11:06am
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Aside from the volatile question (because people in denial about this will never cop to a label that they don't want to put on themselves), meds, doctor appointments and groups would be out of business if everyone was okay with alopecia. Clients (victims?) are needed, however temporary that mindset.
I went to the NAAF conference in 2000 (or was it 2001? Oakland.), and was really hopeful about the prediction "5 years until a cause, 10 years until a cure" they made. Then 9/11 happened, and all research funding was saved for life-threatening diseases. Boy, was I disappointed about the loss to alopecia. The country used money for other things, and "only cosmetic" alopecia took a back burner. When my Kaiser insurance wouldn't cover wigs or treatment, even when my 11-year old son spoke in my behalf at the appeal hearing, I gave up and gave in to one cheap synthetic wig on my birthday each year. Same style all year. I just quit all treatments, raised my kids, got a new career, and made new relationships if others didn't accept my condition. I kept my personal power, and made strides in other areas than hair. Some do not do that. My own question is, why don't these people tackle mind, soul, talent, travel, love, philanthropy and achievement instead of whining about alopecia all day? Why aren't they looking at other aspects of themselves while assessing their own worth? Are they bored, uneducated, limited-in-scope, 0r brainwashed by hair ads and TV stars? Addicted? On meds? Pressured by family or rude hubby? Have a mental diagnosis? No one wants to admit to these, either. If that is the case, Kasta, I think there is nothing we can do about it with words alone. Sometimes, people have to search within their own understandings of their world. Or just get a hug.
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Comment by kastababy on June 17, 2011 at 1:24pm
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Tallgirl,
I totally can relate to your point. And from all these observations, and in coming across and speaking to other people and realizing that they are seeing the same thing I'm seeing, it makes me wonder why it is that with all the disillusionment and anger that is there why it hasn't galvanized into something more vocal. Let the American Cancer Society or American Lung Association have had their funding cut off in the aftermath of 9/11, and there would have been riots in the streets. What did NAAF do when their funding got cut off? How much money was actually allocated to alopecia research out of the NIH budget? A tiny fraction of the budget??
At some point, the alopecian community must stop adopting an attitude of complacence with the status quo (and allowing NAAF to perpetuate it) and start demanding more. Now don't get me wrong - NAAF is a wonderful resource for people newly diagnosed with alopecia, and their education machine is one of the better ones out there. However, NAAF is not - and should not be - our only voice representing us. In all honesty, there is only one thing that is unanimously in the best interests of all alopecians - and that is a CURE. Until we start pushing harder for that, nothing else matters.
I want this blog to be a lightning rod for issues that nobody wants to talk about. I may lose friends because of my views, and I may ruffle a few feathers, but as long as it sparks dialogue, that's all that matters too.
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Funding for the alopecia registry for research ends Sept. 2011. If I could figure out how to force people to donate money for my causes in a recession, I would still be a fine artist...or be employed at all!
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Thanks for the info. It's going into my next blog.
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Comment by Lili Añel (aka Eulalia) on June 17, 2011 at 8:57pm
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Dear Katsababy,
First let me say how I commend this blog and how brilliantly it is written by you. If there would be a way to share this blog, like the way Facebook functions on wall posts, I would, and I would recommend EVERYONE on this site read it.
Like everyone else who posted, I, too, agree NAAF is an excellent resource for information on Alopecia. Yes, it would be wonderful for there to be a cure. My personal opinion is that one won't be found until they figure out WHAT causes us to get Alopecia in the first place. Luckily, we don't get sick and we do't die from this disease. Having said this, it nonetheless is very difficult, especially as a woman.
When most of my hair fell out in late February I felt horror and relief. What I hoped would NEVER happen, finally did. I was relieved because the day FINALLY came. My "victim" stage was waiting for the hair to go; the wondering, the changing my hair color and hair cut to cover spots; the praying it would not be windy on any given day. When I lost my hair I no longer fell "victim" to the weather, or sweating or fear of getting into a swimming pool, etc. I thought to myself "what must this be like for children who have yet to develop self-esteem and coping skills?" My best thought for dealing with all of this was to raise awareness and help kids with alopecia.
I approached NAAF. I wanted to put together a music event where I could raise money for a camp, an event to help children where they can go with their parents get info, but still be kids, not worry about how they looked, have workshops, etc., but SPECIFICALLY for children. They really had nothing. They stated my money collected would go to "research". I was relentless in my search and found the Children's Alopecia Project "CAP". They assist kids with this condition with events throughout the year that help empower them (and their parents) by providing info, break-out groups with psychologist, role-plays, groups led by successful alopecians and an annual camp, where kids can go and have fun as well as get informed and helped to develop self-esteem and coping skills. Jackpot! I will be posting this event soon as it will take place September 16, 2011 in Philadelphia.
I don't know if a cure will ever be found and if it is, then that will be great, but for now there is NONE. But it is key that we learn to accept ourselves until then. We need help in the here-and-now, adults and children in coping with this. Everything you write here about those who give up their lives is the truth. If only they'd open their hearts and minds they might not hurt so badly. I consider myself extremely lucky; for some God forsaken reason, I am handling this and it ain't this big magilla for me. I wish others would free themselves.
I love what you wrote here. You are my sister in Alopecia and I am proud to know you.
WE ARE SURVIVORS; NEVER VICTIMS. NEVER.
With admiration and respect. - Lili
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Maybe we could look to that pre-cure state of mind for other conditions that now have a cure, to see how people felt and handled the research progress.
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Comment by Norm on June 18, 2011 at 7:45pm
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Well, I'm going to ruffle a few feathers now - because in my opinion, a cure for alopecia isn't just "not needed" - it's a waste of time! (That made you sit up, didn't it?) But, what IS needed is a change in perspective... a different way of looking at the "problem".
This might cause some peeps to get their backs up, because I've not got alopecia like most of you on here... but let me try and explain.
Go back to basics, and what, exactly, is going on? Well, you've got no hair, that's what. But why is that such a big deal? Why should it matter that some people (you!) don't have hair? Because really, it shouldn't, should it? For instance: some guys go bald.... some don't. And does anyone make a fuss over that? No. And the guys that do - the ones who wear wigs, have transplants, etc - are ridiculed! - which is the exact opposite of what's happening to alopecians! - because that's "the natural way of things".
So, if it's "natural" that men go bald, why isn't it also "natural" that some people lose varying amounts of their hair? What's the real difference? Answer - none.
I suggest that the real issue here isn't about being bald... that's just the hand that life deals you and the way you look, same as your eye colour, height, etc. etc. No, what it's really about is feeling "normal" and "accepted" by society, and getting to the stage where you don't even think much about it at all. So the "cure" for alopecia isn't about finding ways to grow hair again - that's not going to happen, realistically, is it? - it's about it not being any kind of deal any more.
Actually, that's the easier thing to accomplish, anyway.... think how totally-bald guys are looked upon now, compared to 20 years ago. It's cool, now, isn't it? And that didn't used to be the case. So if it can be done for guys... if society's attitude can change like that... it can be done for gals too. Simpler and cheaper than trying to find ways to grow hair again!
So come on, peeps. Love yourselves a little! Stop wishing your hair would come back, or that someone will come up with a cure! No-one else is bothered or concerned you've not got hair.... it's not going to stop you doing anything or mean no-one will love you! The more you make alopecia out to be something of concern, the more everyone else will pick up on it and expand upon it! Live your lives like nothing much has happened... because actually, as far as everyone else is concerned.... it hasn't!
OK, rant over - what do you think? Agree? Disagree? Food for thought? (steps back awaiting copious quantities of rotten eggs and over-ripe fruit to head his way....) :)
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What do I think of your comment Norm? I think that not only is that line of thinking foolish, but I also think it's dangerous. Let me explain why.
First, trying to compare the normal aging process of a middle-aged man to the sudden, unwanted, unexpected loss of hair in a child is not even possible. Male pattern (and female pattern) baldness is a normal by-product of the aging process; as our bodies (and hormones) change, so too does our bodies' ability to do certain things, like grow hair. NOWHERE is it normal for a 4-year-old, an infant, or a 20-year-old to suddenly lose their hair, for ANY reason. Let me say that once again just so I'm clear: ALOPECIA AREATA IS NOT NORMAL. Therefore, the way we approach it should not be normal either.
At the risk of sounding like an alopecian snob (which, by the way, is going to be the topic of my next blog), I will venture so far as to say that no matter how much you sympathize with Joyce, or try to empathize with the people on this site, until you have lived the life as an alopecian (which, by the way, I don't wish on anyone), you will NEVER know nor understand why it is so important that a cure be found. This kind of thinking that you have very eloquently expressed in reaction to this blog is the same laissez-faire attitude that NAAF has taken toward the whole alopecia issue. Let's make no mistake here: Alopecia is a DISEASE. It is NOT a condition. It is not a normal function of our bodies the way God designed or intended them to be. Therefore, it needs to be fixed. If I had MS and posted the same blog, would you give me the same response? Of course you wouldn't. In fact, you would be in total agreement with me that more needs to be done and that we need to be more vocal about getting something done. Why should it be any different with alopecia? Oh, I forgot -- because the only thing it affects is our psyche - it's merely cosmetic, it's not going to kill me. Oops.
I haven't stopped loving myself any less or accepting the current state of things in my life any less simply because I desire a cure for what ails me. Alopecia, for the past 29 years, IS something of concern, and quite frankly, as the spouse of an alopecian wife, it should be something of concern to you too. If I don't want any hair on my head, I want that to be because it is MY choice to take it off, much like I would make the choice to shave my legs or wax my eyebrows (if I had them.) Just like it is not the natural way of things to be overweight or not be able to walk, it is not the normal way of things to be bald. If it were, then EVERYBODY would be bald and there would be a $4 billion dollar industry totally dedicated to keeping the hair gone.
Are you going to the NAAF Conference next week? If so, I would LOVE to see you explain your logic in this post to a child living with alopecia and her parents. I would love to see you justify your reaction to this post to all of the children at the children's camp there. And I would give my teeth to see their reactions when you tell them that having their immune systems attack their hair like it would attack a virus or a bacterium is totally normal and they should "get over it."
If this reaction comes across as being angry -- angry doesn't even begin to describe what I felt reading this, especially coming from the spouse of someone with alopecia. I'm disappointed in you Norm. Words don't even begin to express how much.
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Dear Dom-
"Its what you think about body image, social interaction, being different that causes the problems and is where you should place your emphasis on. Thats where acceptance lies.Wasting time and money on cures is just spinning your wheels."
Plainly put, this IS the answer. Bravo for your answer here. I am an "Accepter". Amen.
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Comment by onekeylady on June 19, 2011 at 2:30pm
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I too am a survivor, and have never considered myself a victim. Seeing so much tragedy in my life with my siblings that suffered from auto immune diseases (diabetes, ms, thyroid) as well as other diseases, I have felt fortunate that the only auto immune disease I have is alopecia, and am thankful that I have lived past the age of 50, as half my brothers, both parents, both grandparents and several other family members did not. Yes, I would love for there to be more funding and awareness for others with alopecia, and hope that a cure is found for our children to come. Until that time comes, I can only stay strong and positive to show our children that we are indeed survivors so that they may never feel like victims should they also come to have alopecia, or any of their children, friends, neighbors to come. I would want them to spread that modivation teaching their children to do the same in memory of all alopceians. I feel outreach is the greatest tool we have in our hands and is needed in the future so that more and more awareness will help to push for more research and more funding. At age 50 I had never heard of alopecia, until my hair fell out. There are so many other auto immune diseases, and still some most of us are unaware of their existance until we become a survivor. I also believe that research for any auto immune disease can potentially lead to a cure for alopecia. I have learned a lot from NAAF and think they do a wonderful job.
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