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Being a kid is hard enough, but being a kid with alopecia can be down-right difficult. Fortunately there are some fantastic organizations that offer support, friendships, and fun to kids who are dealing with this disease. There is the Children's Alopecia Project (the photo at left is from their camp), the I'm a Kid Foundation, and Locks of Love. There are cool dolls for kids of all ages, as well as web sites and coloring books.
Being new to this whole alopecia thing, we know you probably have a lot of questions. This is a good thing. You should seek out all the answers you can, because as cliche as it sounds, knowledge IS power. There is a lot of information out there, on this site and many others, that can help you to understand better the medical aspects of your condition. Soak it all up. But there are some things your doctor probably won't tell you (unless you are very lucky). And as rare as alopecia can be, you very likely don't have anyone handy to sit down and seek advice from.
Well, you've surfed to the right place, you clever devil. Because our veteran team members have a collective ocean of good advice to share on all the stuff you were afraid (or didn't know who) to ask. And furthermore, the whole lot of us are absurdly intellegent and wise! It's true.
Now, if we haven't covered your rookie question yet, just use the comment link below, and ask. After all, what are teammates for?
(And to all experienced team members: please remember back to when you were newly diagnosed. Remember how confused and frustrated you were? And how little you knew about what to do, and how to handle what was happening? Please give generously of the knowledge and practical solutions that you have aquired through trial and error. Think of what could have saved you some trouble and heartache if you had only known. Let's subtitle this area for the veterans among us as "If I knew then what I know now..." and we'll regard the "add comment" links below as "add advice" links. You'll be doing a wonderful thing.)
Your hair is falling out and leaving you with bald patches, and your physician tells you that you have a disease called alopecia. Now what? Get a second opinion? Go buy a styling new hat? Go hide in the closet? What?
Alopecia is not only a hit to our natural human vanity, but moreover a blow to our whole image of ourselves. This is very, very normal. You are experiencing a real loss, and need to grieve. There are also the societal assumptions and judgements to deal with about hair loss. There is the fear and uncertainty over the progression of your disease and what "might " happen. You would be extraordinary if you didn't have moments where you wonder "why me?". But there are ways to cope and even thrive during this time.
Honestly, what should you even be looking for in a doctor? Do you need a specialist? What are the right questions to ask? What should you do if your doctor is dismissive or unhelpful?
When you are new to alopecia, those bald areas can undermine your confidence and cause you to worry that every stiff breeze will make you the object of unwanted, wide-eyed stares from those around you. But time and practice teach you how best to camouflage those pesky patches. There are ways, and they do work.
First you need to consider for yourself how much of your disease is their business, especially when we're talking about 'social' friends. But that decided, how best to explain what is going on with your body to your interested parties? And how to explain what is going on with you emotionally? How to ask for help? What to do if you don't get the reaction you were hoping for?
Wigs can be a scary thought for many new and experienced alopecians alike. They can represent a surrendering of all hope that your hair is going to grow back. And there is also the fear of looking strange and, for lack of a better word, 'wiggy'. We imagine that people will certainly 'know'.
But that doesn't have to be the case. Falls (sometime called wiglets) are so hugely popular that you can find them in most malls and in lots of fashion boutiques. And you may like how they look so much that you continue to use them if and when your hair grows back. And full wigs are making fashion inroads with the glitterati and thus becoming more and more affordable, natural, cute, and comfortable. Fear not!
Some say that male alopecians have an easier time socially than their female counterparts. Maybe, maybe not. But if you are the guy having to deal with it, hearing that someone else may be struggling more doesn't really solve your problems, now does it?
Men with alopecia have some unique issues of their own. Not the least of which is the lack of good looking and affordably priced hair pieces.
This can be a seriously touchy area, no pun intended. What will your significant other think about your hair loss? How to broach the subject with a new boyfriend/girlfriend? Will you be able to still see yourself as sexy and beautiful? Will they?
Come on, spill it. Under our veterans subcategory of "If I knew then what I know now...", how would you have advised your earlier self? What do you know now that could change for the better the experiences of someone who has just been diagnosed?