Comment by Sarah McIntosh on May 11, 2008 at 12:45pm

I have had Alopecia since I was 2 yrs old,so I can relate to how you feel,the best thing my mother ever did for me growing up was teach me that losing hair wasn't a big deal and that I can still do whatever I wanted. she taught me when people ask questions to tell them truth,totake it as a chance to educate,and when kids made fin of me she taught me to say so?? or and whats your point?? It helped a lot. High school for me was a different story,true it was a struggle but remembering there is life after highschool helped.I'm 23 years old now and have no hair anywhere,I'm engaged to be married and have a baby boy and a good life,having alopecia gave me a open mind to everyone and thing,I do feel I am a better person because of it. I know its hard because people can be so rude but I like to think they just don't know better and thats sad for them,they'll miss out on a lot of great people and adventures in life because of it.Anyways I hope this helps a little bit.

Comment by Mommy on May 11, 2008 at 5:21pm

Ok- your upset and angry that your daughter has this. You have a right to feel this way. I am upset too! I ever so grateful it is not something worse but I am definitely not grateful for having her having this. I think as a parent you always would rather it be you than them. I would shave it all off in a second if it would help. It is hard to be their protector and not be in control of these things. Especially, since it is a condition that they don't know a whole lot about. I too have had someone think she has cancer. Actually, I wrote about it in my very first post. I think that night I was so disturbed by the comment I searched the web for a site to reach out to others. That was when I found this one. I am so thankful I did. It has helped tremendously to deal with the emotional side of things. I understand the blame too. You really do start to wonder is there some connection between the stress and the condition. Is my daughter too emotional about things , do her father and I bicker too much, etc. what is it? I think part of me thinks if it is stress than maybe we can do something about it. Stress can be controlled right? But my logical side doesn't think this is what happened with my daughter. I know some parents do see a stress trigger it seems to have a more physical stressor ( like an illness, event, etc) not just a child who is has a sensitive nature. Today I don't feel so bad about it ( tomorrow might be different). I am trying to keep my self loathing to a minimum ( just kidding). As a parent we are all plagued with guilt ( I think I might have told you this before). Mommy guilt will always be there, have your moment to beat yourself up about things ( in your thought only of course) and then move on. You are doing the best job you can and that is all we can do. You did not cause Della to have this disease. Your family will get through it together and yes ( although the road will be long and tough) I do believe we will be better (but more bruised) people. I also know I have to tell this to myself as a way to cope with the hard times to come. But that is okay- I need to rationalize things and put a positive light on things, that helps me right now. Tomorrow I might curse a little and that is okay too. Grant yourself permission to do the same. Just don't dwell too long in the negative because your daughter needs you! P.S. Recently someone told me they had read a book or something called, what you think of me is none of my business. I take it to mean we should start caring less about others approval and letting it influence how we feel about ourselves. You might be young but a good mother you definitely are so don't let others make you feel less than.

Comment by Trina on May 12, 2008 at 8:12am

Miranda,

I totally understand your frustration. To think I am a mother who went through the struggles of being teased for having it, and now my child has it. Like you, I blamed myself two fold because I figured I was the reason that this condition was passed through my genes. While like you sometimes it can get rough, she will be so much stronger for it. i find that my daughter was much stronger when I was. Support is the most important thing you can give. Don't beat yourself up. We know that you are a good mom or you would not be on here geting to know people like her. As a mother you want to protect and shelter her and that is to be expected. Just know that it will get better and dont let anyone tell you any different. Use others for support, we are all here to help one another. In the end the person that she will become will be strong if you continue to stress that her hair does not define who she is as a person. I can only imagine what you are going through and I pray that all these little kids find peace.

Comment by Shawna Reed on May 12, 2008 at 2:28pm

I am sitting at my desk crying. I totally understand your frustration, and I feel the same way. If I could trade places with my Maya I would in a heartbeat.

Comment by leanne dallen on May 12, 2008 at 9:16pm

please hang in there i am 40 only had it 4 2 yrs i have no support from my mother tells me to wake up stop crying about it but cant stand to look at it .your little girl will need your love and support i know how i feel and i am old she has her whole life ahead of her in the future she might surprise you and become a very stong person,and i will pray she does cause it will be a long road

Comment by kastababy on May 13, 2008 at 11:14pm

Miranda,

As someone who has spent the overwhelming majority of my life with alopecia, I find it very interesting to read the blog posts and discussions of the parents here. I read your stories of frustration, upset, and guilt, and it makes me wonder if my mother ever felt this way. Did my father feel the same way? My grandmother? My parents and family were such a source of strength and such great teachers when it came to teaching me to defend myself and love myself above all else that I sometimes take for granted that they must have gone through the same emotional turmoil (albeit behind closed doors) that I have.

My mother and I have our moments of conflict about my alopecia, more now in recent years than when I was a child -- and I think at this point in my life that I need to hear that she hurt for me about my alopecia, and every day I came home crying from school she cried too. I think at this point I don't need my mother to be strong for me anymore, because she made me strong enough to carry this burden we call alopecia with dignity and style!

You know what kind of parent you are to Della and your other children -- and we know what kind of mother you are to Della -- it takes an extremely strong person to reach out to hundreds of people over the Internet and share the spectrum of emotions that you feel on a daily basis when dealing with this condition. That strength is going to carry you through over the years, and as long as Della continues to see you as a strong person she herself will continue to be a strong, brave little girl who will grow into a strong, brave woman capable of dealing with anything. If you are a spiritual person, I would always suggest prayer. In fact, if you are a praying person, it is when you feel you are at your weakest that you should pray the hardest.

Continue to keep fighting -- it's okay to be upset and frustrated and angry, and you should express that, lest you keep it bottled up and let it eat you alive. But remember that Della WILL pick up on what you are feeling, and how she feels about herself and her alopecia will be a direct result of what emotions she sees coming from you. Children are extremely perceptive, so just be careful is all.

I hope you had a great Mother's Day!!! :)

Hugs to you and the kids!!!!

Comment by MARIA (mom of Savanna) on May 20, 2008 at 4:43pm

I could ask myself the same question and probley have the same answer, It hasnt done anything for me or my daughter, but bring more frustration and aggervation to our lives. Savanna is a beautiful lil girl but she doesnt see it, she is so focoused on the fact she doesnt have any hair, and her wigs are not real and they arent even her hair, she talks about the lil girls who have long and pretty hair in her school and it upset her...this disease is making her a jealous person. I try to tell her having hair doesnt make her who she is or who she wants to be when she grows up, but in her eyes all she is, is the girl with no hair. What do you do? How to you help them? You can give them all the words of encouragement, love, strength, buy them all the wigs,hats,scarfs, you want but it doesnt change the fact..." She has No hair" I give savanna the option to accessories...earrings,braclets,necklaces..polish her toes and fingernails...I am so use to seeing savanna bald she has been this way for 3 yrs I cant even remember what she looked like when she had hair, all i know is that i love her terrribley, I talk when she want to,I listen when she wants me too, I treat her no diffrent then i do my boys.


I know exactly what you mean about people thinking she is sick and getting extra added attention...I could name several things that we have experienced, it use to make me so angry, and at times some comments still do, but it doesnt bother me as much anymore as it use to, I think just over time you learn to deal with it, I know savanna would love to have her and i would love for it to grow. I have learn that the best thing for the both of us is to acknowledge her condition and deal with it, show love and support and give compliments as much as possible, this i believe helps her self-esteem...I am doing the best i can as a parent and she is doing the best she can as a victim of alopecia

Comment by Mom on May 21, 2008 at 12:19pm

I also understand your anger and frustration.. I also have had times of great sadness and anger. So has my daughter, who is 12. Don't be so hard on yourself, you can make it through this, sometimes in times of trial don't try and focus so hard on how you will handle this or how she will, just focus on it day to day, step by step and you just will realize that you are doing it. I would never imagine my middle schooler who lost her hair in a year and is in a new school, wearing a wig would be doing so well for the most part. But she is. I imagined the worst as far as how she would be doing, but she IS adjusting and so are we. Just keep loving her and building her confidence when she is so young, she WILL be ok.
Amy

Comment by Nicole on June 30, 2008 at 9:35am

I just read this and am feeling the same way. i'm angry, at no one in particular, that my daughter has to go through life with this. It sucks.

Comment by Billie on June 30, 2008 at 10:59am

This is the reason I am so thankful for this site. We can praise, vent, and lift up those who have the need. ALL of us totally understand how you feel in one way or another due to Alopecia of any kind! Sending all parents some 'strong' support!

Comment