Eileen Rodriguez - 12/27/00 20:58:23
My Email:eirodr@aol.com

Comments:
I was touched by your detail on this Ugly disease for children, Thank you for thinking helping otheres with information on JDMS, My 5 yr old neice was recently diagnosed with this, and we are all desperatly looking for open doors to information Thank You again and may God BlessYou and Your Family Eileen Rodriguez Tampa, Fl

iwan soetjipto - 12/12/00 07:33:40
My Email:isoetjipto@hotmail.com

Comments:
Hi, Jordan, I know you must be a beautiful and strong girl I have ever know, I am chinese from Indonesia, do you know where it is? and my sister in law is diagnosed as Dermatomyositis patient, that why I know your information by browsing in the net lookin for some information of this deseases. Jordon, I am very proud of you since you are only a little child and you are so tough to face it! Bravo ! little girl! wishing and praying for a miracle that you will be recover soon and spend this beautiful life.

Marlo Hofmann - 11/30/00 13:21:43
My Email:mhofmann3@visto.com

Comments:
Hi! My name is Marlo and I am the mother of 2 beautiful little girls, Gabrielle, 4 yrs, and Savannah, 18 months. Gabrielle was recently diagnosed with Juvenile Dermatomyositis after having symptoms since she was 16 months old. Her condition was repeate ly misdiagnosed until we were seen by a wonderful Dermatologist and Rheumatologist here in Dallas. We now live in Garland, a suburb of Dallas and Gabrielle is a patient at Scottish Rite Children's Hospital in Dallas. In fact, her IV Solu-Medrol Pulse tr atments begin TOMORROW! My emotions have run the gammut, from being relieved to finally have a name to her condition, to being so unsure and fearful of putting her on all these powerful medications that can cause other serious problems in the long-run. have not been put into contact yet with other DM patients and their parents (from Scottish Rite) and it would be very helpful to me and my husband to hear from someone who has been there and IS THERE. It sounds like Gabrielle and Jordan have several thi gs in common. Gabrielle has had the severe rash since she was 16 months old, first it was thought to be a virus, then a food allergy, next some other type of allergy, next eczema, then it was diagnosed as a rare dermatitis called Pityriasis Rubra Pilaris She has the rash on her face (nose, cheeks, chin, under her nostrils, temples, forehead, and eyelids--EVERYWHERE), the knuckles of her little hands, her wrists, her elbow, knees, ankles, shins, and toes. She has dysphagia and is constantly congested an coming down with the latest upper respiratory virus. Her doctors also say she has allergies and cough asthma. She complains of stomach pain, pain in her fingers, legs, and neck, even when she has her hair gently brushed! She has edema around her eyes nd has lost much of her appetite. Overall, I believe she just feels downright miserable and weak most of the time, which leads to her moodiness. I am interested in knowing how you have dealt with Jordan's illness and if you have incorporated new diet ch nges, lifestyle changes, or other homeopathic approaches in conjunction with her standard treatment. I am also interested in the side effects she has experienced with her meds. I am a stay-at-home mom who loves her daughters dearly and am ready to try an thing that might help Gabrielle get better. It would be wonderful to talk to you, if you get a chance, please email me. I appreciate your time and do hope that Jordan and your other children and mom and dad, too, are doing well. God Bless You all, Marl

cheryl carbary - 11/18/00 22:36:46
My Email:lilzane4life329

Comments:
your page is so beautiful.. it make's me want to cry beacuse it remind's me of my grandpa that pasted away..

Martin Kelly - 11/07/00 18:22:09
My Email:martin.j.kelly@verizon.com

Comments:
Hi Jordan, My name is Martin Kelly. I wanted to share this information with you. I hope it gives you some encouragement. In 1966, I was 14 years old. I came down with Juvenile Dermatomyositis. I went through all of the things you're going through now. I was told that I would never walk again. I was unable to perform even the most simple task. I was unable to move me head f om side to side or even open and close my hands. I went through what seemed like endless and quite painfull rehabilitation therapy. Every day for over a year I worked at this and had to learn how to walk and function like all the other kids around me. Today I am 48 years old and I have lived a completely normal life for the last 33. Don't give up hope. It is possible to beat this terrible disease.

Rebecca Lynn - 10/31/00 05:33:17
My Email:Missy562@AOL.com

Comments:
I'm 17 years old and i have been diagnosed with your disease for six years. Hang in there things will all work out. Pray. I'll keep you in my prayers. Feel better. Love in Christ, Becca

Rebecca Lynn - 10/31/00 05:33:09
My Email:Missy562@AOL.com

Comments:
I'm 17 years old and i have been diagnosed with your disease for six years. Hang in there things will all work out. Pray. I'll keep you in my prayers. Feel better. Love in Christ, Becca

Lacretia Gall - 10/26/00 19:50:52
My Email:lacretiagall@hotmail.com

Comments:
thank you for your diary , my daughter was diagnosis about 6 mo. ago with JDMS she is 14 years old.we have a long road ahead. but she is handling it well.

Lacretia Gall - 10/26/00 19:31:23
My Email:lacretiagall@hotmail.com

Comments:
thank you for your diary my daughter has dermatomyositis too she is 14 we found out about 6 mo ago. we have a long road ahead.

SUE - 10/25/00 19:25:35

Comments:
I WAS VERY INTERESTED TO READ YOUR WEB PAGE, YOU HAVE A VERY CARING AND DEDICATED MOTHER. I AM A PHYSIOTHERAPIST IN ENGLAND WHO SPECIALISES IN JDM AND I AM STARTING A REGISTRY OF PATIENTS WITH OUR CONSULTANT. PLEASE KEEP WELL AND BE PROUD OF YOURSELF

Linda - 10/15/00 06:13:44
My Email:corvettelady2211@aol,com

Comments:
u r gods little blessing. my prayers go out to u and ur family daily. Take care Jordon and may god bless, Linda

Nan Dudley - 10/06/00 01:19:29
My Email:anandudley@aol.com

Comments:
Dear Jordan, It is an honor to talk you. I found your page because my own daughter,who will be 21 years old the end of this month, needed a topic for her college class. She is studying to work in hospital as a technician and espicially wants to work with children. Any ay, she wanted a topic no one had ever covered before so she decided to do one on the desease I grew up with since I was 8 years old.Dermatomyositis. In 1966, I began showing signs of weakness and other symptoms. To make a very long story short, I went th ough 3 different doctors and 5 different diagnosis before Dr. Chernosky of Houston,Texas made the correct diagnosis and saved my life. By the time this was done not much time was left for medication to take hold. It was touch and go for awhile. I went to very medical convention as his guest so that doctors form all over the world could gain knowlege of this desease. I did have a somewhat normal life. I have been married 23 years and have two children 19 and 20. I'm sure new medications and technics are us d today. I know you will grow up and have a happy life as I have. Just do exactly what your doctor tells you to. That is so important!!!!!!If you have any questions or just want ot chat feel free to contact me. Sincerely, Nan

Melanie Kollet - 09/19/00 01:06:16
My Email:Baltimel@aol.com

Comments:
Hi I was diagnosed with JDS when I was 5 years old. I have since out-grown the disease with the help of great doctors and nurses. If any would like to contact me and ask questions about medicines or consequnces of medicine(I have quite a few) just write and let me know. I can be a email buddy to anyone. Good Luck to Everyone and NEVER GIVE UP!!

LENDA TUCK - 09/17/00 16:23:12
My Email:TUCKNEE@AOL.COM

Comments:
DEAR JORDAN: I just wanted you to know that I am so proud of you, you are doing so well. I pray for you ever day of my life. I know God hears me for you are in the proof. I love you dearly, Nee

Jeannie - 09/14/00 13:58:13
My Email:jlgane@roc.mobil.com

Comments:
First I want to thank you so much for sharing your story... it has already helped and I have just started to read. My 8 yr old neice was diagnosed with JDS yesterday. I am trying to educate myself about this disease in order to be a source of support to er and her family. I love your site and will recommend that my sister and her husband visit it! I hope all is well with you and yours and especially Jordyn! God Bless!

Michele Thompson - 08/30/00 23:32:50

Comments:
Hi Jorden, My son was diagnosed with JDM on 11-8-99. He is fourteen. They are trying to get him off of prednisone but it doesn't seem to be working. They tried Imuran and I don't know if that is working either. He goes to see a new specialist tomarrow. I'll pray for you and would you pray for my son, Matt? By the way, I think this is great the way you have a guest book set up.

Jennifer - 08/28/00 03:20:08
My Email:marasco@netzero.net

Comments:
Our son was dx. in oct.98 with jdms at age 31/2 Iam currently reading your diary. I am only in Aug of 98. I hope all is well at this time.

leonor - 08/15/00 16:35:58
My Email:leonorguz@hotmail.com

Comments:
Hi Jordan, I'm 30 years old, and mother of 2 kids 11 and 7 years old, I have been diagnosed with dermatomyositis, on february 20 1999, since that time my life change a lot.God bless you.

leonor - 08/13/00 15:11:35
My Email:leonorguz@hotmail.com

Comments:


LENDA TUCK - 08/10/00 17:16:08
My Email:TUCKNEE@AOL.COM

Comments:
HELLO BABY JORDAN, THERE IS NOT A DAY GOES BY THAT I DONT PRAY FOR MY GRANDBABY. I LOVE YOU SO DEEPLY WITH ALL MY HEART. I KNOW GOD WILL HEAL YOU BECAUSE HE LOVE YOU SO VERY MUCH. SENDING MY LOVE TO YOU, NEE

rachael - 07/25/00 02:59:32
My Email:bud davis road@aol.com

Comments:
HI JORDAN!I AM RACHAEL'S MOM. SHE HAS BEEN VERY ILL(off and on) THIS YEAR.THEY THINK IT IS MYOSITIS.I HOPE YOU HAVE MANY GOOD DAYS AND ALWAYS REMEMBER:A CHEERFUL HEART DOES GOOD- LIKE MEDICINE!THANKS FOR YOUR FUN WEB PAGE!JEANNE

rafy gierbolini - 07/02/00 01:54:10

Comments:
!dios te bendiga! (god bless you)

kelley paterson - 06/14/00 04:37:58
My Email:keithhawkes@hotmail.com

Comments:
my sister susan who is now an extremly active 33 yr old,also suffered with dermatomyositis as a child.she was confined to a wheelchair and endured a heavy medication regime as well as physiotherapy.she has suffered no relapses since completing treatment.h r lifestyle now is packed with all the sports and exercise she missed out on as a child.i hope everything goes as well for you.

Robert G Hair - 06/04/00 18:59:23
My Email:hair@cconnect.net

Comments:
Dear Jordan. First of all JESUS love`s you!!! Yesterday 3-june-2000 my eight year old niece was told by the doctor`s that she has JDMS and my family has been turned upside down, but in what we can gather by a few hours of reading about this JDMS we are still confused yet by the grace of the lord JESUS he will see us through this, that is me,you,and mary my niece and my brother. thank you for yourdiary we will pray for you,god bless you and your family. THE HAIR`s BOBBY,DONNA,ZACHARY,EMILY,ABIGAIL,BARBARA HAIR

JANET T. - 05/30/00 03:15:22

Comments:
Hello, My name is janet and my son was diagnosed with DM on April 21,2000. My son is 3 1/2 yrs old and he has began treatment. He is now in physical therapy 3xwk and is taking prednisone as his medication. I am looking forward to reading your diary. God bless You!

JULIE T. - 05/29/00 02:20:08
My URL:http://JULIEBEEBO.COM
My Email:JULIEBEEBO@AOL

Comments:
HI, MY NAME IS JULIE AND I HAVE A FOUR YEAR OLD DAUGHTER HER NAME IS ALISSA. ALISSA WAS DIAGNOSED WITH JDMS TWO MONTHS AGO. MY PRAYERS AND THOUGHTS GO OUT TO YOU AND YOUR FAMILY

JULIE T. - 05/29/00 02:04:48
My URL:http://JULIEBEEBO.COM
My Email:JULIEBEEBO@AOL

Comments:
HI, MY NAME IS JULIE AND I HAVE A FOUR YEAR OLD DAUGHTER HER NAME IS ALISSA. ALISSA WAS DIAGNOSED WITH JDMS TWO MONTHS AGO. MY PRAYERS AND THOUGHTS GO OUT TO YOU AND YOUR FAMILY

jennifer wilson - 04/01/00 22:30:23
My Email:gfhainje@localline.com

Comments:
looking forward to reading your daughters diary.My saon was diagnosed with jdms June 1999. He is still fighting the disease by taking prednisone and infusions of cytoxin and salumedrol twice a month we seem to be at a stand still. Hope to gain more knowle ge from reading your diary. thank you and god bless

SUSAN PAPA - 03/24/00 18:50:32
My Email:papa@hawaiian.net

Comments:
What a beautiful page, it reaaly touch my heart. I got 11 yrs. old son diagnosed with myositis but I really don't have any idea what kind of myositis he got. He got biopsy last Sept.1999 but until at this time doesn't have a result. We are living in avery small Island in HAWAII. And it's really hard because we don't have any lab to do all this researh.My son got this for 6 yrs. I can't explain how I felt right now. Your website and info helped me understand about this very rare disease. I'll pray for all w o have this disease.God bless and E-mail on another time. THANKS!!!!

- 03/24/00 08:55:25

Comments:


Linda Mosley - 03/09/00 03:48:59
My Email:lkmosley@home.com

Comments:
Hi there, from Dallas, Texas. Glad to see your book. My son, Jason, is 19, and was a patient at Texas Scottish Rite Hospital for Children in Dallas, Texas, until last year. He was diagnosed with JDMS in the 7th grade. He has been in remission for abou the last 18-20 months. Keep us in your prayers because he may be showing signs after all this time of a relapse. I am frightened for him because I don't know as much as I should about how this disease will affect him as an adult. Thanks just for liste ing; it is comforting to be able to ask questions of other folks out there undergoing the same thing.

louise walsh - 02/27/00 17:55:29
My Email:louise walsh11@hotmail.com

Comments:
hi just read your page your a very brave girl i"M 19 and my mother got dermatomyositis in 1997 i"m still trying to find info on it when i came acrosss your page best of luck love louise ireland

Jessica Davis - 02/26/00 02:29:41
My Email:JessicaDavis27@hotmail.com

Comments:
My daughter Lexie has had JDMS for 2 yrs 5 mos. She is 6 yrs old. She is taling 5mg. of Prelone daily, 100 mg. of Plaquinil daily, 4mg. of cyclosporin (Neoral) twice daily, 15mg injectible of Methotrexate once a week, and finally 2.5 mg twice a week of nbrel. She still has a rash over most of her body and functions o.k. She has muscle stiffness in her hips really bad. We go to the Dr. in a couple of weeks to check on calcification. The Dr. doesn't think this is happening but the physical therapist d es. We'll see I guess. It is really nice to be able to talk to someone else who has JDMS. Feel free to email me at anytime. Jessica

Scott Green (Hayley's Daddy) - 02/19/00 19:19:23
My URL:http://images:victoria@home.att.net/~mscottgreen/images/hvg1.jpg
My Email:mscottgreen@yahoo.com

Comments:
My daughter (Hayley, 6) has just been preliminarily diagnosed with JDMS (MRI, biopsy, emg, eye-exam, etc. next week). I'm so thankful for your website, sweetheart and for your faith in God. I see it as God-guided that we saw a doctor in Houston that was i volved in research in Chicago for JDMS when we weren't supposed to...Saved a lot of time! Hayley has just began contracture symptoms (2mos.) and no rash yet (when she flushes she's a little "mottled" around her eyes). Your website and the information it p ovides is also a God-send. Our prayers are with you! And God, of course, is with us all! Thank you, again. I look forward to learning more from you...

aubree - 02/06/00 15:31:13
My Email:epsd1000@yahoo.com

Comments:
hi my name is aubree. i am 22 months old and i was just diagnosed with jdms. hope fully we can chat some more later on. good luck and may GOD BLESS YOU!

Cristina - 01/26/00 18:20:23
My Email:orozcoc@earthlink.net

Comments:
My daughter has JDMS. She was 4 years old, she is know 6 and still living with the condition. We will be praying for all children with this condition.

Suzanne - 01/26/00 02:14:34

Comments:
Hi Jordan! My daughter, Laura, is 12 and has JDMS. Your diary is very interesting. We are praying for you. Keep your chin up!

Bob - 01/20/00 20:04:42
My Email:bdunn@kimbanet.com

Comments:
Thanks so much for your WEB page. I don't have juvenile, but my wife is tentatively diagnosed with DM. As yet no treatment...given 2 drugs, plaqunil and quinecrin, both of which caused violent allergy reactions. We read averything we can, but its slow. ..thanks again ;-))

Daniel Wattleworth - 01/19/00 16:26:07
My Email:dwattleworth@cmn.org

Comments:
I work at Children's Miracle Network helping to raise funds for children's hospitals across the U.S. and Canada. I am currently working on a profile of a girl from Canada with dermatomyositis. It has been very interesting learning about the disease and ts effects. God bless you and the other children like you who have suffered and conquered! You are an inspiration to all of us.

Wanda Sparkman - 01/17/00 04:04:31
My URL:http://www.oocities.org/wspark_77099
My Email:wspark@wt.net

Comments:
I am also praying that Jordon will get better. I love your homepage. Pat has created me a homepage and I love it. I know you don't have time to look at it, because your hands are full. I just wanted to drop by and let you know I have added you and your fa ily to my prays. Wanda Sparkman, Kristy KORONKA Sparkman, mother-in-law. Houston, Texas

Debi Compton - 01/13/00 14:48:01
My Email:comptonz@bellatlantic.net

Comments:
I am a mother of an 11 year old boy who has been inconstant pain for over a year and am looking for answers. He is currently being treated for Osgood-Slater Disease. After reading your diary, I don't think he has what you do even though he constantly co plains of fatigue, muscle pain, joint pain, no appetite, and doesn't sleet much at all because of the pain. I commend you for your courage, your wonderful parents and for this web site. Thank you and good luck in the future.

Debi Compton - 01/13/00 14:36:47
My Email:comptonz@bellatlantic.net

Comments:
I am a mother of an 11 year old boy who has been inconstant pain for over a year and am looking for answers. He is currently being treated for Osgood-Slater Disease.

Janis Browning - 01/11/00 23:55:02
My Email:grmaswank@aol.com

Comments:
I was diagnosed at 8 yrs. old and will be 50 in April 2000 I wish you the best of luck and a happy and painless future God bless you

maggie cicero - 01/08/00 20:03:02
My Email:ciceromp

Comments:
my niece and dearest friend paige lunghino is hospitalized in childrens hospital of buffalo after seeral months of diagnosis that were not correct they finnally linked her to this disease she was admitted yesterday and wiht great spirit and determination and strength she started treaments. It is very difficult to give advise, help or know what the future holds for my sister ,brother -in-law, nephew and my niece-but it is heart warming to read this information you are all in my thoughts a d prayers and thank you for the uplifting information I will share it wiht my family. Warm Regards, Maggie Cicero

Kimberly - 12/29/99 07:45:34
My Email:kimm_77478@yahoo.com

Comments:
I haven't read your info yet, but am interested for I have an 8 year old son who was diagnosed with JDMS this past year. Thanks ahead of time for taking the time to help others.

Jeff Jubenville - 12/10/99 01:18:28
My Email:Finsrule@Juno.com

Comments:
Dear Jordan, Hi Honey, My wife Laura and I have a little girl named Lindsay, she is 4, and also has JDMS. We will pray for you my Dear, and always remeber that The Lord is bigger than the Disease, and he Can fix anything, stay strong and Don't lose faith. God Bless you sweetheart. I hope this finds you felling well. Love, Jeff and Laura Jubenville ZA

Judy Anderson - 11/25/99 03:05:15
My Email:andej@prodigy.net

Comments:
Your web site is wonderful. I was diagnosed with Dermatomysositis in 1980. Now I am 26 years old and healthy. I was on prednisone for 2.5 years. GOd bless Judy

Susie - 11/21/99 20:11:48
My Email:SusienNC@yahoo.com

Comments:
I am just beginning to read your story about your daughter Jordan. My daughter Amanda is 12 and was just diagnosed with DM last month. Hope to talk soon.

Amanda - 11/18/99 01:56:08
My Email:mandie5852@hotmail.com

Comments:
Hi.I'm 12 years old and been diagnosed with dermatomyositis a month ago.This is all new to me too.I'm still looking around your sight, please e-mail me I would like to talk to your daughter too.She's about my age, thanx.

Jo Conti - 11/06/99 03:31:39
My Email:jomaz@bigpond.com.au

Comments:
What a beautiful page. I also suffer with DM and have so for 6 years. I'm much older at (31) but I suppose DM can affect any one. My heart goes out to Jordan as well to all the family. Have faith and always have hope that one day there will be a cure. .thinking of you in my prayers..jo

sharon - 11/03/99 17:50:31

Comments:
hold your head up, keep your faith strong, as a fellow dm sufferer i will pray for you

- 10/28/99 23:31:34

Comments:


Santas lil Helper - 10/28/99 17:08:39
My URL:http://geocities.com/santasworkshopwest/
My Email:don't have one...

Comments:
Check out the page... please....

Katy Carter, RN - 10/28/99 16:11:41
My Email:kcarter@usd266.com

Comments:
I am a middle school nurse. I have a student with juvenile dermatomyositis. I am looking for information to share with her teachers--specifically her PE teacher. Thanks for your information!

Pam England - 10/26/99 23:57:23
My Email:pengland@socal.rr.com

Comments:
We'll pray for you!

kim jagodzinski - 10/25/99 06:46:12
My Email:yellocaddy@aol.com

Comments:
god bless you,

- 10/12/99 01:05:00

Comments:


A. Adair - 10/08/99 05:46:16
My Email:ala28@hotmail.com

Comments:
God bless you and take car.

BERNADETTE - 09/28/99 23:13:19
My Email:CARRAMELL1@AOL.COM

Comments:
HI! MY SON CASSION HAS DERMATOMYSITIS IS PRESENTLY 8 YEARS OLD, HE WAS DIAGNOSED AT THE AGE OF 3 HE HAS BEEN ON PREDNISONE FOR THE PAST 5 YEARS AND RIGHT NOW WE ARE TOLD THAT HIS DISEASE IS IN REMISSION. HE HAS ALOT OF OLD LESSIONS,AND IS CURRENTLY SUFFER NG WITH SEVERE CALCIFICATIONS

Rebecca Graves - 09/22/99 00:52:45
My Email:h8skiddo@netscape.net

Comments:
My sister-in-law just found out she has this except she is 30 years old. I am proud to see that one exceptional little girl is working her way through this disease. It makes me realize that we adults are not the only ones that have lifes problems to dea with. My heart goes out to you, dear, and your family. Good luck and I hope we, together, can find a cure!

Peggy Koscielniak - 09/21/99 01:01:56
My Email:farmloss@aol.com

Comments:
Our daughter Niki has been living with Dermatomyositis for 3 years. She is now 11 and doing well. It is very helpful to share with others through the Web.

Jenny - 09/08/99 16:22:48
My Email:brianjm@win.bright.net

Comments:
Hi My daughter,Janelle, has JDMS. She is almost 8. We are just discovering the internet. It is so cool to find other people who have this. Noone has heard of it or seems to understand what we are dealing with .THANK YOU Jenny

Shari - 09/05/99 14:41:01
My Email:kshobe@mindspring.com

Comments:
I am so glad Jordan is doing well, I think of her often. We have a 4 year old that was diagnosed when she was 2. She has good days and bad ones but is a very strong and brave little girl. We will keep Jordan in our prayers.

CAROLYN SANDERS - 08/24/99 23:23:47
My Email:rothsan@hpnc.com

Comments:
I ENJOYED VISITING YOUR WEB SITE. YOUR AUNT PAT DID A GREAT JOB IN DESIGN. YOU SOUND LIKE A VERY BRAVE YOUNG LADY AND ONE THAT HAS BEEN VERY BLESSED TO HAVE SO MANY LOVING FRIENDS. PLEASE LET ME HEAR FROM YOU. MAY GOD BLESS AND KEEP YOU.

Julie Ryan - 08/22/99 00:38:21
My Email:tonyryan@standard.net.au

Comments:
What a Lovely page! Well done. My 12 year old may have DMS but I won't know for 2 weeks. So I just surf the net to find more information. You are right about to being hard to get. Julie Ryan Victoria, Australia.

Tonya Wainwright - 08/16/99 19:31:42
My Email:tonya@gnat.net

Comments:
God Bless you. We will remember you in our prayers

Alberto Pineschi MD - 08/16/99 12:58:20
My Email:pinalb99@yahoo.it

Comments:
I'm an italian Pediatric Surgeon. I'm 46 and I've got two boys: Gabrio is 15 and Edoardo is 9. I work at the Dept. of Paediatric Surgery of Turin and I stumbled into your site while searching informations on myositis, a disease I'm diagnosing in a patient of mine, a 4 ys old boy. You have devised a wonderful site: please keep helping people this way. All the best, Alberto & family

Amy - 07/28/99 15:46:09
My URL:http://members.delphi.com/waylonzgrl/index.html
My Email:WaylonzGrl@aol.com

Comments:
Hi. Your daughter sounds like a sweet girl. I wish that I could do something to help. But I don't know what I could do to help you out. I love children. I want to become a kindergarten teacher so I can help children. If there is any thing I can do jus let me know. I will do my very best to help no matter what k. Take Care and may God be with you and your family always. Amy Edwards

Paula - 07/07/99 02:17:04
My Email:paulamm@gateway.net

Comments:
Thank you for putting together a most informative and personal page. I am a hand therapist who just started to treat a very young lady with JDM. As you sadly are aware available information is limited. Thank you for providing valuable insight! p.s. I really liked your page design! Best of luck to you and Jordan. Thanks again for sharing your personal experience.

Pirkko Merikanto-Tikka - 06/24/99 21:06:25
My Email:juha.tikka@pp1.inet.fi

Comments:
Hi Jordan! I just wanted to send you some greetings from Helsinki, Finland. I have a little daughter, Sara, she's 1 yr 7 months now and has just been diagnosed with JDMS. All the best to you and have a nice summer!Best regards, Pirkko

Gabby Nelson - 06/19/99 02:44:15

Comments:
I can see that it is a rare disease and it is dangerous. I had never heard of that kind of disease in my life this is my first time and I really hope she gets better. May God Continue To Bless You!!!!!!!!!

Lisa - 06/10/99 03:16:52
My Email:ljsilva@sprynet.com

Comments:
Hi, My daughter was recently diagnosed with JDMS and although she's been hospitalized twice, she seems to be doing much better. Keep up the good work on the page.

Lana Hansen - 06/06/99 15:52:07
My Email:mtgirl@mail.csuchico.edu

Comments:
My 6 year old niece was just diagnosed this week. I feel very confused and want to know what I can do to help, as well as more about this disorder. My heart and pryers go out to you and to your family. Love and much happiness, Lana

Alex Gold - 04/26/99 05:23:32
My Email:marciagold@earthlink.net

Comments:
Hi Jordan: I'm ten years old and have the same thing you have. I just met Julia (from Julia's JDMS Diary) Friday night, and we played Nintendo 64 and stuff. I hope you get better soon. From Alex

Stephanie - 03/11/99 02:01:42

Comments:
I enjoyed reading your journal. My daughter was diagnosed with JDMS when she was 30 months old. It was a very difficult time for our family. She will be 5 in a couple of weeks and is doing alot better. Her doctor is very happy with the progress she has made. Ill keep reading. Thanks

Andy Woodward - 03/10/99 19:37:34
My Email:estelval@alltel.net

Comments:
Hello I am Andy I am in the second grade. I have a golden retrevier named Charlie. I like your web page. My mom and I will be praying for you.

Erika Kroeplin - 03/09/99 01:36:39
My Email:kmuns@bellsouth.net

Comments:
Hi, I am a 10 year old girl who had JDMS also. I have had it over over 14 months. My rash started in Dec. of 1997. I was in a electric cart for 4 months so I could go to school last year. But I am doing good now muscle wise. I still have the rash which I have to be careful in the sun. My hardest think I have now, are bad headaches maining at night time. They sometimes make me sick. Take care Erika Kroeplin

tracy key - 03/03/99 03:49:47

Comments:
thank you for all the information. I have a 6 year old little girl who is in the early stages. We are getting ready for the biospy. my mother and cousin both have dermatomyositis

Dan Pipal, MPT - 02/22/99 17:11:45
My Email:SREGAN@OVHD.com

Comments:
Thank you for the information regarding your condition. I am a physical therapist in small town who is looking into treatment for a 10 year old patient of mine. good luck. dan

Pat - 02/04/99 05:44:34
My Email:mkles@primenet.com

Comments:
Opps! I see your Mom, Sherrell fixed up your web page! I'm impressed! Pat

Pat - 02/04/99 05:40:38
My Email:Mkles@primenet.com

Comments:
Hi Jordan! I think your book is really neat. I am especially happy to see your notes about Jesus, since he is my Friend and Savior too. I hope you are feeling better now! You have a really nice Dad to set up such a nice webpage for you! I will pray f r you and your family. Thanks for your inspiration! Pat

mgm1940 - 12/23/98 03:49:59
My Email:mgm1940

Comments:
my husband and myself are friends of bill and lesia evans . we just got on line and tracy brought your up for us to read . GOD BLESS YOU ALL AND HOPE YOU HAVE A BLESSED CHRISTMAS. OUR PRAYERS ARE WITH YOU.

Jessi King - 12/18/98 16:50:19
My Email:jess456@aol.com

Comments:
Thanks for the information. I am 15 and have dermatomyositis, and it was great hearing from others similar to me.

Mary Ruhlen - 12/09/98 04:40:20
My Email:mary.ruhlen@gte.net

Comments:


stephanie - 12/07/98 03:05:31
My Email:jbrown6285@aol.com

Comments:
your diary has truly helped me, my 8yr old just had her biopsy on 12-3--the drs. are 95% sure it is jdms

Ruth Buesking - 12/01/98 19:18:57
My Email:d0956@gte.net

Comments:
Hi, Thanks for putting your thoughts down for others. It helps. My 5 now 6 yr. old, Michelle was just diagnosed in August. She recovered quickly, but has just had relapse. She's doing fine, but has difficulty with many things. Anyway, best wishes for you and your Jordan. I'll check back again. Ruth

- 11/19/98 04:48:06

Comments:
Jordan I love your page. I will be praying for you and glad you are doing better. I have fibromyalgia and I know how hard it can be at times to just get through the day. God has carried me through some very difficult days. I am looking forward to the holidays I hope you have a great Thanksgiving and a very Merry Chirstmas. God Bless Phyllis

j_seer - 11/14/98 14:13:42
My URL:http://www.oocities.org/SoHo/Coffeehouse/9180/
My Email:j_seer@yahoo.com

Comments:
I happened upon your journal today and I was saddened about your family's trial. But, at the same time I also thought I'm glad you know the Lord. "Let us hold unswervingly to the hope we profess, for he who promised is faithful." God's best to you, j_see

Michael - 10/25/98 16:27:45
My URL:http://members.tripod.com/~Dubruiel/gravenimagejournal.html
My Email:abba38@aol.com

Comments:
Nice page and loving tribute to your daughter Jordon!

Allan and Shelia - 10/19/98 23:51:48
My Email:kb5ucm@accesscomm.net

Comments:
I come in just about every day to see how Jordan is doing. September has been a great month for her and we are so excited to hear about her progress! Prayer is a powerful healer! You and your family are in our prayers daily. We love yall...

Glenda and Ken - 10/01/98 03:28:55
My Email:kjunlady@wt.net

Comments:
Hey there...your web page is great...just wanted to let you know our prayers are with you and Joey and Jordan and family....take care and if there is anything we can do let us know...we would love to help out....love glenda and Ken and family

Joey - 10/01/98 00:55:40

Comments:
Jordan, It is great to see you doing so well. I am so glad you went to church with us on Sunday. It was nice to have you sitting beside me once again.I love you Jordan and I can't wait to see you again. Love Joey

Uncle Richard - 09/26/98 17:56:01
My Email:pmb@myriad.net

Comments:
Dear Jordan; Pat told me that you are really doing well. I am so happy to hear that. Keep the faith and keep your positive attitude. My prayers are with you. Sincerely, Richard.

Aunt Pat - 09/24/98 17:59:25
My URL:http://www.oocities.org/Hollywood/Academy/6362/patscorner.html
My Email:pmb@myriad.net

Comments:
Sherrell your diary entries are very good,but the best one is September's,I am so happy Jordan is getting better and I pray for lots more days like that for Jordan and for you. Love you....Aunt Pat