Jill
  • Female
  • Berlin, MD
  • United States
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Jill's Friends

  • Nancy Eby Bryant
  • Susan
  • Diana K. Owens
  • Tracy and Amanda
  • suzanne
  • Donna
  • LeslieAnn Butler
  • Children's Alopecia Project
  • Dotty
  • Cheryl, Co-founder

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Relationship Status:
Married
About Me:
My son is 14 and has officially been diagnosed with alopecia--but has actually had it since he was 3. His is due to an auto immune disease- psorasis. Which sadly began about the same time he began losing his hair. So hit with two things at once. He began losing small patches on the back of his head and it grew from there. The doctors first said he had ringworm and treated him for that for almost two months. Well sadly the medicine made his psoriasis worse because it dried his skin out. When he ended up having a severe reaction to the medicine his Dr. sent us to a dermatologist, still not knowing what he had. I had done some research through the computer and pretty much knew this is what he had, why didn't the dr. have a clue? Well it was confirmed finally. And all the responses have been the same where we live. No-one has ever seen an actual case, so this has not helped my son. It was extremely hard for a 14 year old freshman in high school to be losing his hair. He tried growing it out real long to cover it up. He joined the football team and became their wide receiver. Unfortunately I was unaware that there is something in the foam of the helmets that actually increases hair loss in alopecia patients. The hair was falling out so fast I could not keep up--patches everywhere. Finally, on Thanksgiving break we had to make the decision to shave his head. We knew it was better for him to go with no hair then look like he was going through chemo, which he was asked constantly if he had cancer. The school accepted a note from his dr so he was able to wear a hat within school hours. But it has not been easy for either of us. For him not having anyone to speak with, and me watching him lock himself in the bathroom and hear him crying, and asking god what had he done. I still tear up just thinking about it. But he has been careful to be strong in front of me, almost as if I was the one dealing with this. After almost two years and losing all hair, eyebrows and eyelashes included. He has begun to show some hair regrowth. Even without the needles and steroid cream, which I put a stop to. Didn't seem to be helping. The cream just made him irritable and the needles were just so hard to bare. The hair is very fine, and very white. We've actually had to keep shaving because its growing more in certain places than others. But hey we take what we can get, right?!
Do you have alopecia?
Parent or guardian of child with alopecia
Are you age 18 or older?
Yes - I am 18 or older
Your Website (Leave blank if you don't have one):
http://www.myspace.com/sportslover52 www.facebook.com/sportslover52

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Comment Wall (9 comments)

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At 5:49pm on July 19, 2009, Diana K. Owens said…
Hi Babe: Sorry Daddy didn't get your message. He did have a couple of small jobs to do when I left and I guess he got tired out taking over for me! (smile).... All went well here tho. He is working on the front door today. Taking the side lites off and painting them. Hopefully he will hang the new storm door when he gets it all done! (fingers crossed).... I just got home from grocery shopping. Bah....(smile). I also got some things for Gramma (who is down again with her back/side/whatever it is). Always something there. So I got her walker down for her to use. I'm getting ready to make some Rotini for dinner so I don't have too long. Luv ya - Don't work too hard. By the way, Jack started another job on Friday :)
Later - Luv ya - Mom. (Kiss the kids and Big Billy for me) Luv them all!
At 1:46pm on July 18, 2009, Diana K. Owens said…
Hi Babe: Just wanted to let you know I am home again! We had a wonderful time. The flight both ways was exciting! I loved being up there in the white clouds (smile).... What a world we live in. I could see everything on the ground except when we climbed to 33,000 feet. It looks just like the railroad scenes we make to go under the Christmas trees! lol. Everyone in Illinois treated us royally. Wow - they were all there - even Judy who came from Florida to be with us! It was very nice. We ate way too much food! (not good for my waist - and I will have to get back to my diet now).... I'm doing catch up now. Will talk to ya later - OK? P.S. Glad to hear that Billy is leaving that hat at home. Didn't I tell you he was handsome....no matter. He has that winning smile. No one will ever notice his head. They will be captivated by his smile. :) Later - Luv ya - Mom
At 1:57am on July 17, 2009, Tracy and Amanda said…
Hi Jill,
Thanks for the birthday wishes for Amanda. I will put her birthday pics up soon.
Tracy
At 9:13pm on July 11, 2009, Dotty said…
Hello Jill,
Just checking in to see how your son is doing. If he just looks around here, the teens and young adults are awesome. I just got back from the NAAF conference in Houston, and every time I attend, I get a renewed sense of friendship and love from my Alopecian family, both young and old (like me!!!). It lasts throughout the year until the next conference. Please let him know that he is most certainly not alone in this and if he wants to chat with an old lady who knows what it's like to be stared at, (the tattoos kind of help in that respect), I am always here for him, or you, any one of your family members and friends.
Love and Hugs,
Dotty
At 5:40pm on July 11, 2009, Diana K. Owens said…
Hi Babe:
I am almost done with my packing. Boy - trying to find out what I am allowed to take on the airplane has been a bust! I guess I need to unpack my toothpaste and shampoo but I refuse to unpack my bar of soap. Soooo they better let me keep it. I can always wash my hair with it if I need to. I packed one sheet to wrap in (all cotton). I hate these allergies! :(
I too hope Huck finds some friends on here. It would be nice if he could ask another teenager how they deal with it....right? Hey - but I am delighted to hear he is on a church trip with kids! That is great! I think once he starts to uncover himself and sees that others don't really pay much attention to the outside of him, he will be OK. It is what is inside that counts and ----I always did say his personality was in his smile and twinkling eyes! :)
Well babe - gotta go - Luv ya - Mom
At 1:35pm on July 10, 2009, Diana K. Owens said…
Hi Babe:
I found this site to be very interesting. A good place to visit. Hope Billy finds some friends who share his situation and he can get some useful hints on how to deal with the day to day happenings. By the way, how's the sunburn? Karina said he got some on his head - I think color will be good for him but not burn! Ouch! Anyways, just finished my cleaning and did the grass yesterday (including next door) so I am ready to pack tomorrow. The clothes are drying on the new clothesline! :) Later - luv ya - Mom
At 10:32am on November 26, 2008, Cheryl, Co-founder said…
Hi Jill, I wanted to welcome you to Alopecia World. I can honestly say that we are a great community here and I hope you enjoy the time you spend with us and we look forward to your input. Cheryl, co-founder
At 6:16pm on November 25, 2008, LeslieAnn Butler said…
Hi Jill,
I know it can be so hard. Sometimes harder for the parents than for the kids.
Just wanted to say hell and welcome!
LeslieAnn
At 2:09pm on November 25, 2008, rj, Co-founder said…
Hi, Jill. Welcome to Alopecia World! This is a great place for great people, so be sure to make your positive presence known. :-) - rj, Co-founder
 
 
 

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