| Stories
in English: H |
| Hailee
Vale: MCTD but Now Undiagnosed I still do not
have any proper answers. I have my own theories as
to what went wrong and I am waiting to see a rheumatologist... |
| Halina:
Mother of Daughter with Morphea (Poland) My
daughter was four, when I discovered a small spot on
her left foot... |
| Heather: Vitiligo, Hypothyroidism, and now Linear Morphea I am not too concerned about
the other two conditions since there really is nothing you can do about
the vitiligo, and the
thyroid is under control. The morphea is what is bugging me... |
| Heb:
Scleroderma I am thirty-one and newly diagnosed.
I am still trying to figure it all out... |
| Heidi:
Difficult Diagnosis of UCTD Do these symptoms
resemble the beginning symptoms for others who have
gone on to be diagnosed with scleroderma? |
| Helen:
Raynaud's Do I have scleroderma? Does it make
a difference if you catch it early... |
| Helen
P: CREST Scleroderma I was diagnosed ten years
ago when the symptoms kicked in with a vengeance following
a very traumatic personal tragedy... |
| Henry:
Eosinophilic Fasciitis The disease then grabbed
hold and started spreading like wild fire... |
| Hilde:
Scleroderma, Lupus, Raynaud's I was diagnosed
with lupus, scleroderma and Raynaud's in 1997. I have
been through hell and back several times... |
| Hope:
Linear Morphea My mom took me to the doctor
and for three months he treated it as ringworm... |
| Stories
in English: I |
| Iceback:
CREST or Limited Scleroderma Never having heard
of scleroderma, I never really asked any questions
when he told me and went home to look it up on the
Internet... |
| Iman:
Morphea When it got too hot and I would take
off my jacket, people would be so disgusted with my
arm. I would always cry about it... |
| Ingrid:
Daughter of CREST and Overlap Patient (Germany)
Maybe there is someone who has a similar or the same
problem and this person could write to me. The doctors
cannot help my father... |
| (Deutsche)
Ingrid: Vater das CREST Sydrom sowie Overlap Syndrom Vielleicht
kann mir jemand schreiben der das gleiche... |
| Irina: Polymyositis When I was nine I had my tonsils removed by surgery. Immediately after the operation I experienced muscle weakness and I had no strength to do everyday things as simple as walking or even getting up from bed... |
| Iris:
Family History of Scleroderma Is there anyone
else who feels that their family has a history of scleroderma? |
| Irja:
CREST, Limited Scleroderma I'm a 34-year-old
woman from the land of Santa Claus, Finland. Ive had
CREST since 1998... |
| Ivone:
Morphea My dermatologist has said that this
has no cure, but that I am stable... |
| Stories
in English: J |
| Jaci: MCTD and Autoimmune Hepatitis Out of fear of going back to the doctors, I tried just to live with it, whatever it was. What I found strange was that nobody seemed to noticed how terrible I was feeling, not even the doctors... |
| Jackie:
Scleroderma, CREST, and Pulmonary Hypertension We
were identical twins, and she died in 1988 from kidney
failure... |
| Jackie
J: Localized Scleroderma Initially I noticed
a dark patch on my left forearm and the front of my
left thigh... |
| Jackie
S: Overlap Syndrome For as long as I can remember
I have had terribly dry skin and a very hoarse voice
with dry mouth... |
| Jacqueline:
Morphea Scleroderma I have multiple grayish/brown/
and white spots on my sides, stomach, and back,,, |
| Jacquie:
Diffuse Scleroderma I am fifty-six years old
and I was diagnosed with systemic scleroderma in November
of 2003, right when menopause hit... |
| James
S: Son of Watermelon Stomach Sufferer Last year,
my mother was diagnosed as a celiac. Since then a number
of other problems have risen to the surface... |
| Jamie:
Surviving Spouse of Progressive Systemic Sclerosis
Patient My husband Jerry, age 35, was diagnosed
with scleroderma in January 2000... |
| Jan:
CREST Syndrome Set goals, maybe just short ones,
but set them.My first goal was to be here to see my
youngest son graduate from high school... |
| Jan
L: Linear Scleroderma and Vitiligo I was not
ever overly concerned with my looks, so I really did
not pay that much attention to it... |
| Jane D: Linear Morphea (En Coup de Sabre) In August 2006, I found another dent in my head, but this one was deeper and longer
and just to the left of the first one... |
| Jane
S: Mother of Morphea Scleroderma Patient In
1990 my healthy and bright six-year-old daughter complained
of her right foot itching and hurting... |
| Janet:
Mixed Connective Tissue Disease I have just
been diagnosed with Mixed Connective Tissue Disease
(MCTD), lung fibrosis, Raynaud's and sicca (dryness)
symptoms... |
| Janice:
Daughter of Scleroderma Patient (Brazil) I have
lupus and my mom has scleroderma. She is sixty-two
years old and does not know that I am trying to understand
her illness better... |
| Janice
E: CREST/Fibromyalgia At some point I came to
the realization that what I was feeling just could
not be normal. By this time my hands were swelling... |
| Janie:
Morphea And it scares me because the feeling
I have on my back is weird... |
| Jason:
Linear Scleroderma I have recently been diagnosed
with Raynaud's as well, have had gastrointestinal
difficulties more common to systemic forms, and have
witnessed these lesions grow and deepen rather than
decrease in size... |
| Jason G: Morphea I went to see a rheumatologist, who unfortunately originally told me that morphea
has been known to lead to systemic sclerosis. Obviously,
he was wrong about this, and later admitted that he spoke too soon... |
| Jay:
Scleroderma and CREST When
I was fifteen or so, I noticed that my fingertips were
starting to get very sore... |
| Jean L: Scleroderma I have been under Dr. Wigley's
care at Hopkins in Baltimore. Currently I am having
a problem with severe itching and burning... |
| Jen:
Scleroderma Morphea About six weeks ago, I hit
a low when I discovered new spots on my arms and neck... |
| Jennie:
Morphea Scleroderma I have spent six years with
an ugly white rash on my neck. During those six years,
the doctor experimented with different treatment... |
| Jennifer:
Surviving Daughter of Overlap Syndrome Patient This
letter was written by my dad and was read at my mother's
memorial service... |
| Jennifer
B: Morphea Scleroderma I am now 24 years old.
I still have the permanent "bruise" on my
left knee... |
| Jennifer
Foster: Eosinophilic Fasciitis (Ontario, Canada) My
husband has been extraordinarily accepting of the rapid
deterioration of my once charming and petite figure... |
| Jennifer
Gayton: Mother of Morphea Patient Last May we
noticed what looked like a bruise on our daughter's
stomach... |
| Jennifer M: Mom of Linear Morphea Patient Almost the minute that the doctor walked into the room she knew what it was. The first words out of her mouth were, "That's linear morphea"... |
Jennifer
Weldon: Systemic Scleroderma/Stem Cell Transplant
Patient I was put on a ventilator and complete
life support. I had five open heart surgeries... |
| Jenny:
CREST Scleroderma My symptoms started to appear
over ten years ago, but I was only recently diagnosed... |
| Jenny
M: Morphea Scleroderma I was told it was a fungus,
vitiligo, and then that it was lichen sclerosus... |
| Jenny
S: Morphea, etc. After a biopsy, I was diagnosed
with morphea at age fourteen. A small spot, size of
a quarter on my lower back that progressed to the size
of two of my hands... |
| Jeri-Lou:
Watermelon Stomach Since then I have had nine
laser surgeries, two units of blood and six iron injections,
which have only managed to bring my blood count up
to a 9 count... |
| Jerri:
CREST Syndrome I was twenty-one years of age
when I first noticed that my fingers, toes and lips
were turning colors... |
| Jerry:
Systemic Scleroderma After twenty-five years
in the medical field I thought I had seen and heard
it all... |
| Jessica:
Morphea I know I will not let this morphea stop
me. I am going to continue living life to the full
like any other twelve-year-old girl... |
| Jessica
M.: Mother of Linear Morphea Patient About eight
months ago my daughter developed a dark circle on her
leg. It looked like a deep bruise, but we let it go.
It never went away... |
| Jessica
N: Eosinophilic Fasciitis Sometimes I still
worry about myself and how my parents are dealing with
this... |
| Jewell:
Diffuse Progressive Systemic Sclerosis When
I think back, I had been getting sick for a long time.
I just did not know it... |
| Jill:
CREST Scleroderma and Sjögren's I could
not face being in or visiting a hospital so I discharged
myself from his care. I decided that I have lived with
it this long so will simply get on with it again... |
| Jill
K: Lupus with GAVE (Watermelon Stomach) My hemotologist
and GI specialists are very supportive but I am so
frustrated at how little any one seems to know about
GAVE disease... |
| Jim:
Scleroderma I have already been found fully
disabled by Social Security for my ankle alone, but
this isn't enough for the good folks at the insurance
company... |
| Jo:
Mother of a Child with Morphea Scleroderma Last
year we noticed that our daughter had a blotchy, purple/red "rash"... |
| Jo
H: Systemic Sclerosis I am eagerly awaiting
an appointment with Dr. Korn at Boston University in
a few weeks... |
| Jo
P: Limited Scleroderma and Raynaud's I could
barely walk ten feet without needing to sit down... |
| Joan
Elston: Systemic Scleroderma, Sjögren's, and Fibromyalgia I
am 61 years of age and live with my husband Bryan in
Durban South Africa... |
| Joan
Stovall: Scleroderma Dallas, Texas I may have
scleroderma, but it does not have me... |
| Joanna: Morphea The
first dermatologist said I had more spots than he could find on any one
person in his medical books and treated me with a steroid tape that I
had to cut into the shape of each spot on a daily basis... |
| Joanne:
Diffuse Scleroderma (Now in memory of Joanne
by Lis) My hands became very swollen and I was unable
to make a fist... |
| Jody:
Fibromyalgia/Difficult Diagnosis In Sudan, I
was on IV for heat stroke and food poisoning. And in
Thailand, at the end of March, it all came to a crashing
halt... |
| Joe Joe: Morphea Because
such a large area of my body is attacked my doctors believe that my internal
organs are also affected... |
| Joe
S: Morphea Scleroderma I am 42 and have had
Morphea for about 15 years now. I have too many bruise-like
marks on my body to count... |
| John:
Surviving Son-in-Law of Scleroderma Patient My
mother-in-law worked as a custodian and that may be
a factor in causing her scleroderma... |
| John
B: Eosinophilic Fasciitis or Scleroderma-Like Condition I
have knee contractures that prevent me from walking,
very tight skin in the legs... |
| John
G: Raynaud's If I walk out to the mailbox across
the front lawn for just a few seconds, my hands turn
a greenish white color and become numb... |
| Johnny:
CREST Scleroderma I have just won the fight
to save my left foot. I spent the previous year and
half fighting to save my big toe, but it had to go,
because the pain was so unbearable... |
| Jon
F: Gastroesophageal Reflux Disease (GERD) I
believe my vagus nerve was damaged in some way during
the Nissen fundoplication surgery or as a result of
it... |
| Jonty:
Son of Scleroderma Patient (Hyderabad, India)
In 1997, I secured a seat in a medical college in Hyderabad
and enrolled for the MBBS degree course. I then took
my mother to meet Dr. Narasimhalu... |
| Jose
Luis: Morfea (Mexico) I am 17 and going though
a difficult time. I need help and I hope someone will
hear me and tell me something... |
| Joshua: Morphea My morphea doesn't look like most. In fact, it looks almost star-shape, mostly because it is in lines and not a solid shape. It is not hard either, so my fear is that it could be keloid morphea... |
| Joy:
Mom of Cassi, Who Has Morphea I carefully checked
the bruises; Cassi (age 6) said that they did not hurt
and she did not have anyone hit her... |
| Joy
W: CREST Scleroderma Two months after my fortieth
birthday, I was diagnosed with CREST scleroderma with
Raynaud's... |
| Joyce
R: Scleroderma En Coup de Sabre When I was fifteen
years old, somebody at school pointed out to me the
fact that there was a white spot in the middle of my
forehead, just below the hairline... |
| Juanita:
Lupus I haven't talked to anyone so I feel kind
of foolish posting this, but right now at 4 AM in the
morning, I needed to get my thoughts out... |
| Judith
F: CREST Scleroderma Having all this information
about my condition is helpful but also a bit daunting... |
| Judy
C: Mother of a Daughter with Linear Morphea Scleroderma Three
months ago, our oldest daughter, Alison, was diagnosed
with Linear Morphea Scleroderma (Juvenile Scleroderma)... |
| Judy
Dee: Diffuse Scleroderma My skin began to harden
and turn a shade of brown... |
| Judy
R. Thompson Devlin: Diffuse Scleroderma with CREST He
said 1 in 200 people get a disease in their lifetime,
and that scleroderma was like having 20-30 diseases
at once... |
| Judy
King: CREST Syndrome A neurosurgeon performed
a Digital Sympathectomy on my right hand and, thank
God, my finger was saved... |
| Judy
Tarro: Diffuse Scleroderma, Sjogren's, Pulmonary Fibrosis
and Pulmonary Hypertension The best we can figure,
I was diagnosed with diffuse scleroderma in 1956. I
am now webmaster of SD World... |
| Julian:
Morphea About thirteen years ago I got a little
white spot in my thigh (coin-like)... |
| Julie:
Morphea Scleroderma I am now thirty-two years
old and have had morphea for almost twenty years... |
| Julie
B: Mother of Linear/Morphea Scleroderma Patient Her
right leg is badly affected with a lot of scarring
and muscle wasting and also the leg length... |
| Julie H: Sjogren's Syndrome, Polymyalgia Rheumatica, and Peripheral Neuropathy I am
in pain all of the time, have trouble sleeping, and if I do not take
a muscle relaxer every night, I will not be able to turn my head the
next day... |
| June:
Widow of Pulmonary Fibrosis Patient I know that
I am not the only person to have lost a loved-one to
this terrible disease, but life is so empty without
him... |
|
