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Patient & Caregiver Stories Main Menu

(English) by First Name: A B C D E F G H I J K L M N O P Q R S T U V-Z

By Language: French   German   Greek   Italian   Polish   Romanian   Russian   Spanish   Turkish

By Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms

Stories in English: B

B. A. McKinny: Mother of Atrophoderma of Pierini and Pasini Patient My seventeen-year-old daughter was told she had Atrophoderma of Pierini and Pasini (APP) last year…

Babi: My Boyfriend has Scleroderma (Italy) He has to go to the hospital for at least four days and get a sort of chemotherapy…

Barb: Diffuse Systemic Scleroderma I was diagnosed in 1985 with systemic scleroderma and Raynaud's. It has affected my esophagus, fingers, toes and bowels, and recently I started having mini strokes…

Barbara H: Generalized Essential Telangiectasia About five years ago some specialists at St, Vincents Hospital had a symposium and I was one of the subjects but they did not have anything to assist me. Laser could help but was very expensive…

Barbs: Systemic Sclerosis, CREST, Raynaud's So from the outset, diagnosis took 20 years…

B.C.: Surviving Daughter of Pulmonary Fibrosis Patient Immediately after the diagnosis my father started to go downhill…

Becky: Morphea and Fibromyalgia The muscle in my forearm has already atrophied, and it has only been four weeks…

Becky H: CREST Scleroderma I am interested in becoming a pen pal with someone so that we can be supportive to each other as changes occur and compare notes…

Becky S: Morphea Scleroderma I worry that if the morphea spreads to my face I would not be strong enough to cope with it…

Bernarda: Mother of a Localized Morphea en Coup de Sabre Patient She still is not fully conscious of what is happening, while I am devastated…

Beryl: Primary Sjogren's Syndrome I was diagnosed a year ago through an eye biopsy as I was having trouble with blurred vision. However, my main problem is with the dry mouth…

Beth: Morphea Scleroderma It is nice to hear familiar stories. I do not feel like such a freak. My dad used to tell me I could join the circus and be a side show as the spotted girl…

Beth R: Eosinophilic Fasciitis My arms and legs are still tight and I still cannot make a fist…

Betty Fults: CREST Scleroderma I would like to talk with someone that has feeding tubes also. Maybe that will help me…

Betty M: CREST Syndrome I was in so much pain for so long that I tried to take my own life. This only ended me up in a mental institution where I was given shock treatments that wiped out my whole memory…

Betty W: Morphea That was in 1984. Twenty-two years later I am fine except for some ugly spots on these places…

Beverly: CREST Scleroderma I was overtired and needed naps in the afternoon, pain was slowly getting the better of me and I finally went to the doctor…

Bill: Diffuse Scleroderma I was relieved to have a label for my condition but the doctor was not very reassuring telling me that there was no effective cure or treatment…

Bill B: En Coup de Sabre It is now getting near my eyebrow. I am a bit concerned it may begin to encroach on my eye and I am not sure what will happen…

Bill Jordan: Surviving Boyfriend of Scleroderma Patient Wendy was heartset on dancing that evening even though she was connected to an oxygen machine…

Bill M: Localized Scleroderma All I want to say is that your life will go on. Do what makes you happy: pray, fish, ride motorcycles, whatever…

Bill T: Diffuse Scleroderma I was diagnosed in July 2008 with Diffuse Scleroderma. I have consistently digressed since then, and have now been in my handicapped recliner, for the most part, since about July 2009…

Billy N: CREST/Scleroderma and Raynaud's I am a private person and prefer to keep it that way, but the public needs to know that too many 'Invisible Americans' are being treated poorly…

Birilla: CREST and Bilateral Thoracic Outlet Syndrome It all began in 1998, I was 32 years old. Two of my fingers turned white…

Blanca: Morphea It has been very painful emotionally watching it just takes over my body with no recourse to find a cure…

Bob: Pulmonary Fibrosis I have learned that you can fight Pulmonary Fibrosis and you do not have to give up all the activities you once enjoyed…

Bobbie Thrasher: Scleroderma I may write a book about my childhood since I am blessed to use my fingers once again…

Boo: CREST Scleroderma Finally in 1994, it was labeled as CREST syndrome, which is a form of systemic scleroderma…

Bree: My Father Died from Aspiration Pneumonia I do not fully understand how or why this form of disease would cause a person to die…

Bregan: Mother of Daughter with Morphea (New Zealand) My fourth child, who is now seven years old, has just been diagnosed with Morphea…

Bren: CREST Scleroderma I had three ulcers on my hands from Raynaud's. I had Botox injections for them, and by the next day they were gone…

Brenda: Limited Scleroderma, CREST, Raynaud's I was sick for five or six years, telling doctors how much pain I was in…

Brenda F: Scleroderma and Cystic Fibrosis Trying to hide it from my friends so I would not seem different has been hard…

Brenda K: Morphea Scleroderma I was diagnosed with Morphea Scleroderma about twelve years ago. It started with a dark linear mark on my lower back…

Brenda M: Primary Biliary Cirrhosis (PBC), Fibromyalgia, Pulmonary Fibrosis, and Sjogren's Syndrome In 1965, when I was twenty-six, I went to work for a firm of electro-platers, which was mainly aircraft work…

Bri: Morphea Scleroderma I am currently waiting to have plastic surgery. They are going to do reverse liposuction; taking some fat and tissue from my left leg and then inject it into my right leg…

Brian D. Jessop: Scleroderma I am a Vietnam Vet from 1968 to 1970. I am from the Agent Orange time on the Saigon River and the Macon Delta Rivers…

Brianne: Surviving Daughter of Scleroderma Patient I think I was eleven when my dad had to go to Edmonton, Canada, for tests…

Brittney: Morphea My daddy tells me all the time that a man will fall in love with me for me and my skin will not even be a factor…

Brother Alan: Systemic Scleroderma I was diagnosed with Scleroderma three years ago and "too many times ten" doctors later, here I am…

Buggzy: Autoimmune Hepatitis, Fibromyalgia, Undiagnosed I am really desperate to get some answers or to hear from others in the same boat as me…

Bwana: Keloids The keloids have spread all over my face, back, chest, arms and legs…

(English) by First Name: A B C D E F G H I J K L M N O P Q R S T U V-Z

Go to Section C: Scleroderma Stories in English
 
 

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