Melissa
  • Female
  • Cincinnati, OH
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  • Lisa F and Chloe
  • Nancy Schmelzer
  • Cindy

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Alopecia and Epidermolysis Bullosa

Started this discussion. Last reply by Verdonck Katrijn Oct 11, 2008. 4 Replies

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Relationship Status:
Married
About Me:
I am a mom to a 10 year old daughter with Alopecia
Do you have alopecia?
I do not have alopecia
Are you age 18 or older?
No - I am not 18 or older

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Comment Wall (16 comments)

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At 1:09pm on April 14, 2010, Lisa F and Chloe said…
Melissa, Chloe would love to chat with your daughter. She is trying so hard to stay positive but I know inside she is worried what may come. Chloe is fully aware what can happen. She has chatted via email with others from this site and it really has helped her understand there are other girls going through this trial. It is very comforting to her. I know she would love to chat through email with your daughter too.
At 1:38am on August 20, 2009, Tracy and Amanda said…
Hi Melissa,
How are you?
Tracy and Amanda
At 12:07pm on July 9, 2009, Nancy Schmelzer said…
Melissa, That is fine, it would be wonderful to meet the rest of your family!. The Panera I am talking about is at the corner of Maxtown and State St. in Westerville. the zip is 43082. There is a Max and Ermas restaurant in the same area. The Panera is right behind it in a strip of stores, etc. There is also a Giant Eagle grocery store at the other end. I can meet anytime that is convenient for you. I have saved the whole day. The park is behind Panera off of McCorkle Dr. in Westerville. How should we do this? I hate to put my phone number out here........ I preach to the kids about safety. Let me know what you think. I am excited to meet you guys and so is Lauren.
At 10:07am on July 6, 2009, Nancy Schmelzer said…
What part of Columbus will you be in? Do you want to meet at a panera for lemonade or coffee and then go to a park for the girls to play around in> There is a great one in Westerville off of State street and Maxtown. Is that too far for you or ok?
At 9:57am on July 1, 2009, Nancy Schmelzer said…
Hi!
July 11th sounds great! I have it pencilled in already. Just let me know the details.-Nancy
At 10:18pm on April 18, 2009, Nancy Schmelzer said…
Hi Melissa,
We are back from vacation and I wanted to see how your visit with your stepson went. Did you have a good visit? We had a great time. School starts monday-I wish we had a few more days off.........
Nancy
At 9:21am on March 9, 2009, Cindy said…
Hi Melissa,
My name is Cindy and my 7 yr old daughter lives with alopecia. I read Nancy's post on your page and I have to say my daughter's situation is very similar. Sam is being treated and is responding to treatment, but who knows what the future holds for her..How is your daughter doing with all this? I responded to your question on the parent board..Cindy
At 7:49pm on March 6, 2009, Mommy said…
Hi Melissa,

I read your comment on another page and you mentioned having a hairpiece that uses velcro to fit into hats. Where do you get it? Who is the manufacturer? I am looking for one for my daughter that might be more comfortable.

Although my daughter has had it for almost 2 years now. She was like your daughter and lost it in about 6 months. I am sorry to hear it has happened. I hope you find some information, help and maybe a little comfort by joining this group. Please feel free to ask any questions. Lynn
At 6:54am on October 9, 2008, Nancy Schmelzer said…
Melissa,
As far as Lauren's loss went. She started loosing it in spots in Kindergarten and then by first grade the sides were gone. it wasn't really until the summer that it really started coming out. We stopped coming her hair in front of the mirror because it was tragic for her to see the loss. Also I felt like vomiting every time I combed her hair. Huge amounts would just come out. Then one day there was only one long strand on the top left. Lauren "disappeared" one day after school and then came down stairs with the strand in her hair. She said here, you can scrap this if you want! She says, I'm done with it! I didn't know whether to laugh or cry- I chose to laugh she was dealing with it in her own way. And to be honest that has been her take on the whole thing-very forthright and upbeat. I have a harder time with the "loss". Some people seem to loose it very quickly but she took about a year and a half. Now it is all gone. So everyone is different and some grow back-some don't. The dermatologist thinks Lauren is one of those who probably won't have hair grow back. But we remain positive. Hang in there. I'm glad you are writing it has been great to hear from you. I hope one day we can get the girls together but I understand its important to take your cues from your daughter. Take care be strong-nancy
At 6:51am on October 8, 2008, Nancy Schmelzer said…
Melissa,
We should have the girls write or maybe we could meet half way one saturday. Lauren has lost all her scalp hair, eyebrows and is now loosing her eyelashes. We have met some older boys in the area, 12 and 13, but she has says she wants to meet a girl like her. Lauren wears a wig in school but after school she is back to nature. How are you handling the alopecia and loss. It has been hard for me lately. nancy
 
 
 

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