The 2005 Romberg's Connection Guestbook

37) November 03 2005 at 02:39:48
Name: orhan
Location: santa rosa california
E-mail: osarabi@fusionfitness.biz
Comments: My best friend just found out she has this disease. What are some ways I can help her with what she is going through.

36) 12.10.2005
Name: Crisan
Location: Romania
E-mail: anaderolro@yahoo.com
Comments: I'm living in Romania, in city of Baia Mare and i would like to recive more informations about Parry-Romberg syndrom.

35) 07/10/2005
Name: Myrto
Location:
E-mail: mirto@quepasa.com
Comments: I am 23 years old from Greece and Romberg Syndrome first appeared at the age of 4. I went through various surgeries and still going. If I can offer any advice feel free to contact me.

34) September 29, 2005
Name: Brandi
Location: Marietta, GA
E-mail: brandigearin@att.net
Comments: I read Kelly Sperry's story in Reader's Digest. Her story really touched my heart. Kids can be so cruel. I just want Kelly to know that I think you truly are a beautiful girl with a wonderful spirit. The world can be cruel if it isn't educated. Keep sharing your story so that people can understand this disease and accept those that live with it. Don't allow the world to beat you down. You truly are a beautiful person.

33) 9/26/05
Name: LEAH
Location: NY
E-mail:
Comments:

32) September 09 2005 at 23:33:08
Name: Sherry
Location: Virginia
E-mail: luckystuck@earthlink.net
Comments: Hello, my name is Sherry I live in Virginia and I read an article about Kelley and thought what a brave little girl she is an how strong her parents are. I know what it is like to have doctors think something is trivial about certain ways our kids look but we know them and can look at little things and know something is wrong. My email is luckystuck@earthlink.net contact me anytime that you need to talk. I have had 3 children my 2 boys were born with too numerous illnesses to mention and a little girl who is 9 now. My boys are deceased. I will be praying for you all.

31) August 25 2005 at 20:18:31
Name: Neil
Location: Liverpool UK
E-mail:
Comments: Just a stranger from across the pond but I just read Kelley's article in Readers' Digest - blowin' yer a kiss gal, & wishing you the very best. If I were closer I'd be bugging you for a date, personally I think you're way pretty. Onwards & upwards stay strong, and best regards to all.

30) 8-24-05
Name: jessamyn
Location: california
E-mail: jessamyn1863@netscape.com
Comments: I have been having very odd and very painful symptoms for some time with no answers. i found a great docotors' office and becasue my symptoms have worsened (to look at) they have now come up with Rombergs. You all are so wonderful to post all of this info and your personal stories and so much rang true for me-the pain, tingling, dark mark on right cheek, cheek indentation, migraines, jaw pain, wavy vision at times, shooting electric pain in cheek,reynauds, elavated ANA?? and a constant active virus in the blood? I was beginning to feel crazy until I found this site and saw that numerous people had all of these symptoms as well. I feel very scared and very alone and would love it if anyone would respond to me. I will also email the two email addresses this site provided. I would love to know if anyone knows of a doctor who is familar with rombergs in CA, preferrably in northern CA. Thank you all -Jessamyn (29 yr. old female-symptoms in face began in 2003)

29) August 24 2005 at 14:09:26
Name: Amarië
Location: Belgium, Kampenhout
E-mail: Lady_Ithiliel@arwenevenstar.com
Comments: I read the story of Kelley Sperry in Reader's Digest, and i really feel pity for her. Not for the syndrome itself, however it seems terrofying *or however you may write this word*, but for all the boys & girls who couldn't accept the way she looked. i really hope the best for her and all the other patients!
Amarië

28) August 21 2005 at 20:13:01
Name: Oscar
Location: Mexico
E-mail: huttereroscar@hotmail.com
Comments: Please could you send to me your guestbook because I have a grandson with this probably Sindrome. There are some information in Spanish? I will wait for your soon answer.
Sincerely
Oscar

27) August 21 2005 at 10:48:27
Name: inge
Location: the Netherlands
E-mail: inge2908@hotmail.com
Comments: I'm very happy to have found this site because until now there seemed to be no other people, familiair with Romberg. Our 19 year old daughter is diagnosed in March 2005. Two weeks later she told us she 's pregnant. So: a very moving period in our lives! I will try to tell our story on the parent's part of this site, soon.

26) August 20 2005 at 20:19:24
Name: Beverly
Location: Santa Cruz, Bolivia
E-mail: bevlewis@wgmbolivia.org
Comments: Reading an article in a magazine that was given to me I learned that the condition I've had for nearly 70 years actually had a name. In all the medical care I had throughout many years no doctor ever suggested that it had a name. I am thrilled to know there are others who understand what it's like.

25) August 15 2005 at 04:32:29
Name: Haley
Location: Pensacola, FL
E-mail: queenofthenile286@yahoo.com
Comments: Hi, My name is Haley. I was diagnosed with PRS at age 4. I am a friend of Kelley and her sweet and caring mother. They told me about the Romberg's Connection and I would love to be a member. It's such a great support system and I would love to be a part of it. Thanks,
Haley

24) August 11 2005 at 06:12:42
Name: Karri
Location:
E-mail: k_a_razy@yahoo.com
Comments: I came to this website after reading Kelley's article in Readers Digest. I just want to say, that Kelley, YOU are beautiful, and I am glad you guys got out of that crappy town. I wish I had the chance to let some of those kids know how simply ignorant they were being. I am glad to have read your story, and to gain more knowledge on this rare disease. I know you grow to do great things, more than you have accomplished already! Good luck in all you do!

23) 7/19/05
Name: Sheree
Location: Bailey, Colorado
E-mail: wtpinner@msn.com
Comments: I am so happy to find this website. I had no idea other people were feeling the same as I was.

22) July 12 2005 at 15:04:48
Name: Trish
Location: Portland, Maine
E-mail: trishm@maine.rr.com
Comments: My daughter Beth is 14 and was diagnosed with Rombergs 5 years ago. It seems to have stopped progressing, after about a 9-10 year progression. She is doing great, has a boyfriend, is entering a terrific all-girls high school in the fall, and is an artist, writer and all-around fantastic person. She refuses plastic surgery because she feels her face is "special" and she was created this way for a reason. We couldn't be prouder of her and if anyone out there would like some support from either her or me, please feel free to write! her e-mail is bethm@maine.rr.com.

And for parents of newly diagnosed children, keep this in perspective. I know it seems devastating but when we were going through the MRIs and the CT scans, etc., I saw many children with cancer and realized, their parents would pay to be in my position. It's all relative....

21) 7/12/05
Name: Kathleen
Location: Lexington, KY
E-mail: Smallerdimension@aol.com
Comments:

20) July 10 2005 at 22:10:24
Name: Linda
Location: Spring Hill Florida
E-mail: lhollan2@tampabay.rr.com
Comments: I have recently found out the name of this disease I have had for the last 37 years. Any info and comments and doctors who are familiar with treating this would be greatly appreciated.

19) July 02 2005 at 06:56:18
Name: Loretta
Location: WV
E-mail: lorettaslanding@AOL.com
Comments: I too was so touched by Kelly's bravery and courage, as told in the R.D. article. It is so appalling that kids can be so cruel. I taught special ed for 25 years, but I don't think I ever experienced seeing such maltreatment as was described. I am so happy you are in a great, new school, Kelly. Good luck. My prayers are with you.

18) June 18, 2005
Name: Terry
Location: North Tonawanda NY
E-mail: Terrymzdz@AOL.com
Comments: I have had reconstructive surgery for Romberg's symdrom in the 1970's. I was diagnoised while in high school, but back then they did not know anything about this disease. Thought it was from dandruff.

17) June 16 2005 at 05:36:12
Name: Kayla
Location: North Carolina
E-mail: kmlittle@carolina.rr.com
Comments: This morning I read Kelley's article in Reader's Digest, and I haven't been so deeply touched in a long time. I am 17 & I just graduated high school, and I am appalled at how you were treated at your old school. Our students could be mean, but we never teased students like outcasts. I am SO happy for you to be in a school now where you are happy, comfortable and treated like you should be. It was very courageous of you to share your story with Reader's Digest. I have a lot of respect for you, Kelley, and wish you the best. You are a beautiful, brave girl and you will do well in the future.

16) June 15 2005 at 23:05:20
Name: Marilyn
Location:
E-mail: rombergs@hotmail.com
Comments: "catgenie26", please write to us again. There seems to be a problem with your e-mail address. Marilyn

15) June 13 2005 at 21:38:39
Name: Michelle
Location: California
E-mail:
Comments: I just wanted to say thank you to Kelley Sperry for having the courage to share her story with Reader's Digest so the rest of us could learn more about this disease. Kelley, you are a beautiful girl and I know you will do well in life. Remember, if God brought you to it, He'll bring you through it!

14) June 08 2005 at 17:35:03
Name: Heather
Location: Iowa
E-mail:
Comments: Kelley, I just read your story in the Reader's Digest. I want you to know that you are a beautiful girl. Don't let any bullies tell you otherwise. I am lucky enough to have no medical conditions, but I was bullied as a child. You are absolutely right; it's what is inside that counts. God bless,
Heather

13) may 15, 2005
Name: adele
Location: staten island
E-mail: adeli509@excite.com
Comments: Dear Terry, Angel in heaven watch over us. Miss you.
adele

12) May 11 2005 at 19:22:38
Name: Tony
Location: UK
E-mail: twarner@btinternet.com
Comments: Hello, Just found out today that I have Romberg Syndrome and found your web site because I wanted to know more. Thanks for all the effort put into your web site. Very helpful and reasurring.
Tony

11) April 28 2005 at 22:46:38
Name: Greg
Location:
E-mail:
Comments: Dear Terry, Happy birthday buddy. I miss you and you are never far from my mind and you are always in my heart. I hope heaven is treating you right, we'll have to catch up sometime and you can show me around the joint..:) I wish you were still here, life is going pretty well. Jim (our other brother) and I and our wives went on a cruise this February and we both agreed that the only thing missing was you..:) You would have loved it and it definately lacked your presence. We are off to the Mayan Riviera in June, if you get any time off up there and come haunt us for a day or two, please stop by..:) I miss you Terry, My life is no where near the same without you in it. You were always an anchor to me, you gave my life a solid base. You were one thing that never changed and never put up false fronts. I miss you..
All my love....Your brother...
Greg

10) April 28, 2005
Name: adele
Location: staten island, new york
E-mail: adeli509
Comments: Happy Birthday Terry Missing you everyday.
Love, Adele

9) April 26 2005 at 00:14:47
Name: Marilyn
Location:
E-mail: rombergs@hotmail.com
Comments: Kim B. Please write to me again. There is a problem with your e-mail address. Thanks!

8) April 16 2005 at 02:37:11
Name: lisa
Location: new jersey
E-mail: lihrt8@msn.com
Comments: hello everybody my story is about the same as everybody else. i'm 40 years old and has had rombergs all my life yes it has affected my life in many ways but i've learned to deal with it. I do hope one day to have more surgery because I know there has to be more advancements made since my last surgery at the age of 17. well hope to hear from you all.

7) 04/06/05
Name: Maggie
Location: Florida
E-mail:
Comments: I came across your site accidentally but checked it out and its a really informative site. I had never heard of Parry-Romberg syndrome. I was well informed by your site. Bravo!

6) April 05 2005 at 16:55:20
Name: Marilyn
Location:
E-mail: rombergs@hotmail.com
Comments: Jasmin, There is a problem with your e-mail address. If Rombergs is a part of your life or it affects someone who you care about, please write us again.

5) April 05 2005 at 06:54:58
Name: Jasmin
Location: Honduras
E-mail: jmontesgufarro@yahoo.com
Comments:

4) March 09 2005 at 21:34:19
Name: David
Location: Lexington, Ky
E-mail: J3553_J4M35_Jr@yahoo.com
Comments: hi, im 20 years old and sience i was 15 i notices that the left side of my face was sinking in. i just learned that i have PRS. i am so lucky that i stumbled across this site. thanks

3) March 05 2005 at 03:16:34
Name: Tanasha
Location: Mesquite, Tx
E-mail: naynay024@sbcglobal.net
Comments: I love this site. It helps me get through the day. I have just recently been diagnosed with romberg syndrome. i am planning on having some kind of surgery, i dont know what it is called, but I will have some fat or something put in my face to try and even it out. So i am kinda worried about that so I am asking you to pray for me. Thnaks... and God Bless

2) 1-17-05
Name: Tricia
Location: Maine
E-mail: twish143@yahoo.com
Comments: Hello hello everyone. Wishing everyone a wonderful New Year and lets all hope someone finds a CURE! It is so very possible. If we continue to e-mail the correct people it will happen. Take care everyone! Always in my thoughts.
27yrs old/ diagnosed at age 26