| Stories
in English: B |
| B.
A. McKinny: Mother of Atrophoderma of Pierini and Pasini
Patient My 17 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... |
| 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... |
| 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... |
|
