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| Name: | Stephanie |
| E-mail address: | SAEO1989@YAHOO.COM |
| Comments: | Hey Bruce, I talked to you a couple years ago about my ex boyfriend Kevin. Email me so we can catch up. I miss our old convo's I hope all is well!!! |
| Name: | susuwatari |
| E-mail address: | susuwatari78@gmail.com |
| Comments: | Hi, Bruce
This's a greeting from Thailand. I've just watch your story through Discovery Channel. You're a great inspiration for everyone. Sorrow and tears are not for you but smile and cheer. ^^ Take care, susuwatari |
| Name: | Unnop Intarasangkanawin |
| E-mail address: | unnopi@cppcnet.com |
| Comments: | Hi! Bruce,
I just watch your story from Discovery channel in Thailand. I really have no idea about EB or any thing. But after the show, I think you are very strong mind and soul. Anyway, just want to tell you that you already "Hero" in my heart. If I down, will think about you and hope that I can be strong as you. Thank you so much for showing us to "live your life" and never give up. "Nub theu yang sung" this is in Thai mean " with the highest respect" Unnop. |
| Name: | Adam |
| E-mail address: | lilirishman87@yahoo.com |
| Comments: | Hi Bruce, I read and was inspired by your life and how you have dealt with EB. I am 21 years old and I was diagnosed with mild EB upon 2 or so when I first learned to walk. I know what it is like to struggle and I think everyone that shares this disorder with us is a very strong person, we have to be. I fought my way through childhood as well, ofcoarse I didn't have as difficult of a time as you did but It was a battle just the same. The doctors told me that I could never join the Service, or any extremely physical activity. Well last year I joined the Army and I once again faced a difficult obstacle that noone thought that I could do. I made it through all of my training and now I am at my unit. I fought a Med board several times but now I have come to a close on my military career as I can't progress any farther with the marching and running all the time. I have been in for almost a year and its been the hardest thing that I have ever done. I hope to inspire everyone else that has EB to do what they want and let no obstacle get in their way, no matter how intimidating. |
| Name: | Louise |
| E-mail address: | louise.stevens@sesiahs.health.nsw.gov.au |
| Comments: | Hi Bruce
Loving your website.....so much to read, I'll be on it all week. You are amazing and a true role model to others. Stevie sent me this and I am passing it on to you - because you fly outside the box!!! Why do you fly outside the box? I fly outside the box because I can But we know the box We are safe in the box That my friend is why I leave it For you may be safe .....but I am free........ |
| Name: | Linda |
| E-mail address: | Linda10338@hotmail.com |
| Comments: | Hi Bruce. My name is Linda and I came accross your web site today. I was very touched by your story.
I was diagnosed with EB in 1963 in Michigan when I was just a few days old. At that time, Doctors knew very little about the disease and Doctors flew from all over to see me. I was lucky and had a mild form of it. Blisters only on my hands and feet, but the rest of my skin was always very delicate...I would scape pretty easily, but no blistering. Pretty much by the time I hit puberty, I only would get blisters from wearing new shoes. I have two childern ages 20 and 25 and they both inherited EB. Both of theirs were also mild. My Daughter was born with a blister on her ankle. My Son didn't show any signs of the disease until he was 2 years old...his was even more mild then my Daughters. My Daughter had a baby 8 months ago...and she also was diagnosed with EB. Her case is a little more severe then my Daugters was. Even though she only gets blisters on her hands, fingers, feet and toes....she also got them on her knees and wrists when learning to crawl. Seems she is never without a blister at different healing stages. I guess I didn't know that there were so many different degrees and types of EB. I felt so bad when I read your story and then I went online and looked up pictures of others with the disease and I was shocked at how severe different cases can be. Anyways, I just wanted to sign your guest book and hope that God Blesses you. Linda |
| Name: | connie holland |
| E-mail address: | connieandralph@bellsouth.net |
| Comments: | Hello Bruce
This is the first time I have visited your site. It is wonderful and I will be back to read more about your life story. You are such an inspiration to others with eb. Your positive attitude is so encouraging to others. And by the way.....you were a cute baby! |
| Name: | C Jane (Harley) Waling |
| E-mail address: | HarleyNlacey@comcast.net |
| Comments: | Happy Birthday, Bruce, you are an amazing person and such a blessing to all the lives you have touched - Hogs-N-Quiches, Harley
I’m wishing you another year Of laughter, joy and fun, Surprises, love and happiness, And when your birthday’s done, I hope you feel deep in your heart, As your birthdays come and go, How very much you mean to me, More than you can know. a poem by JoAnn Fuchs |
| Name: | Mats Hedlund |
| E-mail address: | mats.hedlund@skovde.se |
| Comments: | Hello Bruce i was just watching a program at Discovery about you, you are amazing person,
Greatings from Sweden Mats |
| Name: | Mats Hedlund |
| E-mail address: | mats.hedlund@skovde.se |
| Comments: | Hello Bruce i was just watching a program at Discovery about you, you are amazing person,
Greatings from Sweden Mats |
| Name: | Karen |
| E-mail address: | agreatday34@yahoo.com |
| Comments: | I just visted your site, while looking up eb on the net. Looks great and keep up the good work. I also have eb and would love some support, if you can please email me when you get the chance.
Karen |
| Name: | pamela jones |
| E-mail address: | froggiejones2662@aol.com |
| Comments: | I TO understand the hardships of EB. My youngest son was born with it.I never knew some people lived so long with EB. I lost my son at 11 months old . Please stay strong ,I will pray for you.YOUare a verry special gift from GOD one of thespecial ones. BUTTERFLY KISSES TO YOU PAM |
| Name: | Delicia Swarr Bolin |
| E-mail address: | Butterflit528@aolcom |
| Comments: | Hi Bruce was thinking of you. Wanted to tell you Ian isnt doing so well. He is in a lot of pain and is taking T3 Hydrocodone every 4 hours. He is doing this for now he still has pain with it, so we are looking into starting Methadone, or Morphine. please Keep Ian in your prayers. God Bless you Bruce... please send me a email and tell me how you are doing! Much Love Delicia |
| Name: | Lisa Hezel |
| E-mail address: | ljhezel@charter.net |
| Comments: | Thank you for your webpage! I am a wound care nurse and I am working on an apligraf display for our nurses to see at our hospital tomorrow. I came across your website and was so excited to see how you have taken an active part of your health care. God bless you and best wishes for future successes. Sincerely, Lisa |
| Name: | Jolanta P. |
| E-mail address: | JolaPL@hotmail.com |
| Comments: | I try to search for EB a while ago...in my friends family there is a little girl with EB. I didn't understand what that exactly mean when she said that even hugging and kissing that little girl brings her a lot of pain....
I search web pages for any clue....that is, how I found out about you, Bruce. You are a very brave, young man,not so many human being can even can came close to compare with you. I wish you a LOT, a LOT of health and many sun shines in every day life.... |
| Name: | David Mast |
| E-mail address: | mastsons3@aol.com |
| Comments: | Merry Christmas.
Our family goes to Macedonia Christian Church. I have a son and daughter (Sam and Abby) with CIE Ichthyosis. God Bless. |
| Name: | Jennifer T. |
| E-mail address: | rtielking@hrtc.net |
| Comments: | Hi Bruce, my names Jennifer and Im a hoosier too. :0) I just wanted to say hello, I came acrossed your page while reading browsing the web for information on your condition after watching a TV program about a british boy with EB. I wanted to let you know I marvel at your strenght and courage to continue on with this disease,, Im a 35 year old mother of two who has survived Non-Hodgkins lymphoma cancer that I thought was just horrific. It was nothing by compairson to the struggle that you have managed. I cant even imagine the powerful heart and soul that shine from your eyes. God blessings are yours... humbly Jennifer |
| Name: | Sue Liskunas |
| E-mail address: | sunvyto7@hotmail.com |
| Comments: | Hi Bruce, I currently am a daycare provider for a 20 month old with EB. I was looking for some EB fund raiser ornaments and came upon your site. You sound like a wonderful person and I wish you all the best. Sincerely, Sue |
| Name: | Stephanie |
| E-mail address: | chkymnky31@yahoo.com |
| Comments: | Hey Bruce,
Read a little about EB in my Derm class & found you. You're definitely an inspiration to all - thanks for creating this site so people learn more about not just EB, but the actual faces and people behind EB. Wishing you all the best, Stephanie |
| Name: | Lauren |
| E-mail address: | lauren.porras@cox.net |
| Comments: | i hope everything is going well for you. i'm very glad i came to this website, i learned so, so much. <33 good luck with everything. |
| Name: | Delicia |
| E-mail address: | Butterflit528@aol.com |
| Comments: | Just stopping in to say hello! Hope you are doing well. |
| Name: | Pedro Manso |
| E-mail address: | pedromanso@sapo.pt |
| Comments: | Hi Bruce,
I´m Pedro, I'm portuguese (europe) and I'm 33 years old. I hope that you can read this and that You are OK, ... I read your story and did understand everything i read...it´s a beautifull story an you are a beautifull person. I have EB as well... I think my desease is simplex and I think I don't suffer so much as you.... Forgive my bad english (is not my first language...) Now that you have my email... we can change mails if you like... Best regards Pedro |
| Name: | Madeline Stock |
| E-mail address: | MadelineStock87@hotmail.com |
| Comments: | HEY BRUCE!!!!! I am not sure if you remember me but i was a volunteer counselor at Camp Discovery this summer....i chatted with you the last night at the lock-in while a movie was playing....Any who i just wanted to say hi and see how you were. Email me back....Ill talk to ya later! Bye, Madeline |
| Name: | Brenda Groff |
| E-mail address: | Brengroff@aol.com |
| Homepage URL: | http://www.marketamerica.com/brengroff |
| Comments: | Bruce, You have a wonderful website!Looks like you have a great house!Glad you are doing so well. Brenda Groff |
| Name: | Katie |
| E-mail address: | havalittlcourage@yahoo.com |
| Comments: | Hello.
Just ran across your page doing research about EB. You should be very proud of how you have risen above your circumstances. While I don't have EB, I also deal with a rare disorder that causes a great deal of pain. I have been reading your page as well as others and my heart really goes out to you all. Next time I feel like I can't take any more pain I will remember how you and others with EB have stuck in there. Thank you for your inspiration. You will be in my prayers, please keep me in yours. :) -Katie |
| Name: | Jony Silva Paiva |
| E-mail address: | jony.paiva@yahoo.com.br |
| Homepage URL: | http://http://translate.google.com/translate?hl=pt-BR&sl=en&u=http://www.geocities.com/bruceandeb/&sa=X&oi=translate&resnum=3&ct=result&prev=/search%3Fq%3Depidermolysis%2Bbullosa%26start%3D50%26hl%3Dpt-BR%26rlz%3D1T4ADBF_pt-BRBR232BR233%26sa%3DN |
| Comments: | I think this is very utile thank,s. |
| Name: | Jony Silva Paiva |
| E-mail address: | jony.paiva@yahoo.com.br |
| Homepage URL: | http://http://translate.google.com/translate?hl=pt-BR&sl=en&u=http://www.geocities.com/bruceandeb/&sa=X&oi=translate&resnum=3&ct=result&prev=/search%3Fq%3Depidermolysis%2Bbullosa%26start%3D50%26hl%3Dpt-BR%26rlz%3D1T4ADBF_pt-BRBR232BR233%26sa%3DN |
| Comments: | this is very cool this site was a good idea remain doing that. im from Rio de janeiro/Brasil I dont know speak english right so for any errors seja justificated sorry I am EB too, I have twelve years old. |
| Name: | Melissa Grishaw |
| E-mail address: | melissagrishaw@yahoo.com |
| Comments: | I'm so amazed by your courage, and recognize that God has a hand in your life. You are here for a very special purpose....you can teach all of us to live everyday to our fullest and to depend on God's help to carry us through the most difficult days. I'm so honored to have met you in the grocery store today, and honored that you shared your story with me. I will keep you in my prayers and ask God to continue to give you strength to be an inspiration to others. You have been an amazing inspiration to me!
May the peace and grace of God be with you forever. Melissa |
| Name: | Aletha Rowlands |
| E-mail address: | aletha.rowlands@mjh.org |
| Comments: | How and what is Bruce doing now? I know someone who just had a baby diagnosed with EB |
| Name: | Crusher |
| E-mail address: | Crusher.name@yahoo.com |
| Homepage URL: | http://Crusher.ro |
| Comments: | man.. i've just saw a show on ddiscovery channel about you. No comment.. you are so powerful, so.. i admire you. have a nice an long life. you have my respect. |
| Name: | Crusher |
| E-mail address: | Crusher.name@yahoo.com |
| Homepage URL: | http://Crusher.ro |
| Comments: | man.. i've just saw a show on ddiscovery channel about you. No comment.. you are so powerful, so.. i admire you. have a nice an long life. you have my respect. |
| Name: | Kathy |
| Homepage URL: | http://www.LupusMCTD.com |
| Comments: | Hello,
I'm sorry to read what you have been through. I was actually doing a Google search for a Dr. in ELwood, IN as I am soon moving there. (I"m originally from Anderson, IN) but live out here in CA. I wish you the best of luck with your hralth, I have an autoimmune disorder, my pain and problems are diffrent than yours, and I wouldn't wish your health problems on anyone. Best of luck! Kathy |
| Name: | Mysty |
| E-mail address: | raylene2hot4you@yahoo.com |
| Comments: | Hi. I just wanted to thank you for your website. My best friend just had a baby that was born with congenatial EB. I have spent several days searching for information online. Yours was the only website that wasnt full of nothing but medical terms that I didnt understand. It means alot to me that you are an adult. I have never heard of EB before I bookmarked your page for further reading. If you have any suggestions please fill free to email me. I am very scared for my best friend and her baby Brooklynn |
| Name: | beth lee |
| E-mail address: | sun_bird99@yahoo.com |
| Comments: | very beautiful pic. and i am so proud of you for everything you been through and have never given up no matter what . love beth and miracle |
| Name: | K.C. Sullivan-Sherrod |
| E-mail address: | sweetpea2895836@yahoo.com |
| Homepage URL: | http://tagged.com/onefor1.com |
| Comments: | great story on a real thoe |
| Name: | Jane |
| E-mail address: | nascarfan_n_lacey@comcast.net |
| Homepage URL: | http://www.myspace.com/nascar_fan_n_lacey |
| Comments: | Hiya beautiful -
hope you had a gr8 NASCAR weekend. Our guys are doing gr8 in the standings, of course!! HOGS -n- QUICHES, your friend, Harley |
| Name: | Bruce Mcbee |
| E-mail address: | thebee1@carolina.rr.com |
| Comments: | Im still the best looking Bruce in the family!!!!!!!!!!!!!! Just kidding. How is everyone doing? Hope all is well! Your racing buddy
Bruce P.S. Whats Tony doing on the web site ,you were a Jeff Gordon fan???????????? |
| Name: | Mylinda Pritchett |
| E-mail address: | mylindapritchett@email.com |
| Comments: | Hello Bruce! I came across your story from Ebay, your friend Nascar?? had a link to your story. May God Bless and keep you safe this coming (2007) year. |
| Name: | C Jane (Harley) Miller |
| E-mail address: | nascarfan-n-lacey@comcast.net |
| Homepage URL: | http://myspace.com/harleynlacey |
| Comments: | HAPPY BIRTHDAY !!!! My beautiful & amazing friend - hope you had fun today, my little cutie patootie -
peace, love & joy, jane "Love like you've never been hurt ... Work like you don't need the money ... Dance like no one's watching ... Live like there's no tomorrow ... Rock on! ..." "Don't cry because it's over; smile because it happened" http://www.debra.org.uk/DebraIn90Seconds.htm |
| Name: | Sandy MacDonald |
| E-mail address: | onesexyscot@yahoo.com |
| Comments: | Hi Bruce,
I was born in April, 1966, so I'm a little older than you! I live in Massachusetts about 20 miles south of Boston and I have EBS Koebner. EB has been in my family for many generations - all the way back to Germany where my grandmother was born. I do pretty good despite the blisters - actually I am an exercise instructor - started out teaching water aerobics, because it was all I could do at the time, but as I get older the EB becomes easier to manage and now I can teach studio classes and even the spinning (bike) classes. I love music - all music but not really rap music! I've seen your messages on the eb group forums but just today - it is really quiet at my work - I took the time to check out your website and I am very impressed! I hope you are feeling well these days. I love the fall - summer is a bummer! Nice cool nights and days now mean less blisters for me and my nieces! Enjoy the cooler days Bruce! |
| Name: | Dani |
| Comments: | Hey I'm Dani, 21 from England, I Have Dystrophic EB. I really admire your strength and spirit! Just proves we can do what we want (i'm a drummer in a band) see ya |
| Name: | Kathy Nelson |
| E-mail address: | kimby@tds.com |
| Comments: | Hi Bruce! Just reading your web site. Very very nice. So helpful and informative. I'm sure it helps lots of families with alot of their questions, fears and concerns. You are such a Blessing! Kathy |
| Name: | Gunnar Parment |
| Comments: | Hey! I just saw a programme about you on Discovery Channel (in Sweden) one hour ago. I admire your fighting spirit. (It's pay-tv but I got three months for free, buying a used digital tv-tuner...) Oh, it was about others too but I saw you had a web site so I thought I'd sign your guest book.
I did not fill in my email address above due to spam robots but i always give a hint: first name at last name dot se. |
| Name: | Shirlee LIndner |
| E-mail address: | benathan@seol.net.au |
| Comments: | I have just read your peice on living independent in your own home and about your working life. My son who has EB is 16.5 and we have always encouraged him in computing Iand in Sept he will be sitting for his IT entrance exam. We always encouraged ben to try things himself and felt he needed to learn for himself what he was capable of. It was good to read about the positves in your situation and know that you took each set back etc as a challenge and not defeat. Take care, Shirlee |
| Name: | james ewing |
| E-mail address: | jakajady@yahoo.com |
| Homepage URL: | http://yahoo.com |
| Comments: | Hello Im the nephew of Kermit Terry james He is the inperation of my life. He is very ill right now and might not last much longer. im here to if at least help family members with this afliction to cope and not fear it. I have family that just cant bear to see him thinking that he is just to far gone and dont want to deal with it. i have known him my whole life and there is no better man to me. i know its hard to deal with with but its family and thats all that should matter. it should be looked past and educated about so they wont miss the oppertunity to know someone special and someone that would most deff change there life. iask of you to give my add to anyone that might need to talk,i will lve to help god bless terrys one and all |
| Name: | AMY NICKERSON |
| E-mail address: | butterfly_35_70@yahoo.com |
| Comments: | I HAVE A DOUGHTER WITH RDEB SHE IS 22. SHE TRIES SO HARD TO GET THROUGH EACH AND EVERY DAY. SHE IS A VERY SWEET WOMAN. LITTLE BUT SWEET . |
| Name: | AMY NICKERSON |
| E-mail address: | BUTTERFLY_35_70@YAHOO.COM |
| Comments: | I HAVE A DOUGHTER WITH RDEB SHE IS 22. SHE TRIES SO HARD TO GET THROUGH EACH AND EVERY DAY. SHE IS A VERY SWEET WOMAN. LITTLE BUT SWEET . |
| Name: | Delicia |
| E-mail address: | Butterflit528@aol.com |
| Comments: | Bruce... You are such a special person... I see my Ian in you so much. you have accomplished so much and you are such a great advocate for EB keep up you good work. God Bless you and keep you strong. Gentle hugs and butterfly kisses |
| Name: | Michelle |
| E-mail address: | minirose@ptd.net |
| Comments: | Bruce, your web site is just wonderful and such an inspiration. It's been a pleasure meeting you. |
| Name: | Mary & Tim Brock |
| E-mail address: | mtb-87@hotmail.com |
| Comments: | On March 17th 2006 at 2:55pm my beautiful and courageous son Eric Hanlon passed away rdeb. He was 24 yrs old.The last year to a year and a half he fought infections,skin cancer and fungus.He fought a hard battle but is now finally at rest and pain free.My son Eric is a true unsung hero as is all people with this horrendous disorder.May God bless all eb patients. Mary & tim Brock |