Guest guest Posted April 19, 2009 Report Share Posted April 19, 2009 My 13 year old little boy was recently diagnosed by his pediatrician with scleroderma. We live in Florida and we are going to our first pedi rheumatologist appointment on Wednesday and I am so scared. I found out about the AP therapy through roadback.org and I am conversing with many people on their bulletin board. I was just wondering if anyone on here has a child with scleroderma and how you are coping with all of this and if the therapy has worked for you. Any words of wisdom would certainly be appreciated. Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2009 Report Share Posted April 22, 2009 Sue, You've evidently done your research and learned just how nasty this disease can be, but we are here to give you hope. The antibiotic therapy as outlined in the Frequently Asked Questions Section on www.rheumatic.org has been a life saver for many on this list. Go to the Medical Histories section on that website and read the stories of people who have used the antibiotic protocol successfully to put this disease in remission. I also suggest you purchase Henry Scammell's book " Scleroderma - The Proven Therapy That Can Save Your Life " . When I read your email I immediately thought of Jessie - diagnosed with scleroderma at the age of 12. In August of 1993, she started on the antibiotic protocol and I followed her progress. In the fall of 1996, when Jessie was 16, and when I was still with RBF, Jessie's mother, Bernie Dutton, sent a report of her progress up to that time. You can read it here - www.rheumatic.org/jessie.htm Over the years, Bernie has taken any number of calls from people wanting to know more about and the antibiotic therapy. Today, Jessie has graduated from college, married and is working in Washington DC. She lives a healthy lifestyle - even runs marathons. It has been a while since I spoke with Bernie, so I put in a call to her to get an update on Jessie who is still doing well. (Jessie is going to update her story for us.) I told Bernie about your son, Sue. She would welcome the opportunity to share their story with you and I think you would be greatly encouraged if you spoke with her. Her phone number is 570-622-2250 and her email is bk.dutton@.... She's expecting to hear from you. Ethel rheumatic My little boy > My 13 year old little boy was recently diagnosed by his pediatrician with > scleroderma. We live in Florida and we are going to our first pedi > rheumatologist appointment on Wednesday and I am so scared. I found out > about the AP therapy through roadback.org and I am conversing with many > people on their bulletin board. I was just wondering if anyone on here has > a child with scleroderma and how you are coping with all of this and if > the therapy has worked for you. Any words of wisdom would certainly be > appreciated. > > Sue > > > > ------------------------------------ > > To unsubscribe, email: rheumatic-unsubscribe@...! Groups > Links > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2009 Report Share Posted April 22, 2009 Sue, I forgot to tell you, Bernie works from 3 PM to 8 PM each day, but is available mornings should you chose to communicate by phone. Ethel rheumatic My little boy > My 13 year old little boy was recently diagnosed by his pediatrician with > scleroderma. We live in Florida and we are going to our first pedi > rheumatologist appointment on Wednesday and I am so scared. I found out > about the AP therapy through roadback.org and I am conversing with many > people on their bulletin board. I was just wondering if anyone on here has > a child with scleroderma and how you are coping with all of this and if > the therapy has worked for you. Any words of wisdom would certainly be > appreciated. > > Sue > > > > ------------------------------------ > > To unsubscribe, email: rheumatic-unsubscribe@...! Groups > Links > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2009 Report Share Posted April 22, 2009 Ethel, Thank you so much - you don't know how much I appreciate this! -- Sue From: rheumatic [mailto:rheumatic ] On Behalf Of Ethel Snooks Sent: Wednesday, April 22, 2009 5:31 PM rheumatic Subject: Re: rheumatic My little boy Sue, You've evidently done your research and learned just how nasty this disease can be, but we are here to give you hope. The antibiotic therapy as outlined in the Frequently Asked Questions Section on www.rheumatic.org has been a life saver for many on this list. Go to the Medical Histories section on that website and read the stories of people who have used the antibiotic protocol successfully to put this disease in remission. I also suggest you purchase Henry Scammell's book " Scleroderma - The Proven Therapy That Can Save Your Life " . When I read your email I immediately thought of Jessie - diagnosed with scleroderma at the age of 12. In August of 1993, she started on the antibiotic protocol and I followed her progress. In the fall of 1996, when Jessie was 16, and when I was still with RBF, Jessie's mother, Bernie Dutton, sent a report of her progress up to that time. You can read it here - www.rheumatic.org/jessie.htm Over the years, Bernie has taken any number of calls from people wanting to know more about and the antibiotic therapy. Today, Jessie has graduated from college, married and is working in Washington DC. She lives a healthy lifestyle - even runs marathons. It has been a while since I spoke with Bernie, so I put in a call to her to get an update on Jessie who is still doing well. (Jessie is going to update her story for us.) I told Bernie about your son, Sue. She would welcome the opportunity to share their story with you and I think you would be greatly encouraged if you spoke with her. Her phone number is 570-622-2250 and her email is bk.dutton@... <mailto:bk.dutton%40verizon.net> . She's expecting to hear from you. Ethel rheumatic My little boy > My 13 year old little boy was recently diagnosed by his pediatrician with > scleroderma. We live in Florida and we are going to our first pedi > rheumatologist appointment on Wednesday and I am so scared. I found out > about the AP therapy through roadback.org and I am conversing with many > people on their bulletin board. I was just wondering if anyone on here has > a child with scleroderma and how you are coping with all of this and if > the therapy has worked for you. Any words of wisdom would certainly be > appreciated. > > Sue > > > > ------------------------------------ > > To unsubscribe, email: rheumatic-unsubscribe@... <mailto:rheumatic-unsubscribe%40> ! Groups > Links > > > Quote Link to comment Share on other sites More sharing options...
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