Autoimmune
Diseases:
Systemic Lupus Erythematosus (SLE) |
| This page was written
by Shelley Ensz, and has
not yet been medically edited. See Disclaimer. |
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| Personal
Stories About Lupus |
| These stories
include suspected lupus and lupus misdiagnosis, as well as
those with Overlap Syndrome. (Also see: Difficult
Diagnosis and Overlap
Syndrome) |
| Aileen:
CREST Scleroderma Oh, the wonderful feeling to have
a doctor sit there and tell you that you are not imagining
things... |
| Amy
B: Limited Scleroderma with CREST I am a full time
pharmacist in a pediatric hospital. In February or March
of this year, I began to be very intolerable of the cold... |
| Anna:
Linear Scleroderma (Poland) I realised that it is
not worthwhile to give up, even during the most difficult
moments; it is necessary to fight and to believe that it
will be better. If I had not believed I would not have been
alive now... |
| (Italiano)
Antea: Sindrome di Sjogren e il Lupus Eritematoso Sistemico Sono
Angela dalla provincia di pesaro, ho 29 anni e da ieri ho
scoperto di avere la Sindrome di Sjogren... |
| Archie
Bailey: Scleroderma: Sue's Story Time has passed since
Sue's death. Only those who have experienced the grieving
process can understand... |
| Bill
Jordan: Surviving Boyfriend of Scleroderma Patient Wendy
was heartset on dancing that evening even though she was
connected to an oxygen machine... |
| Bobbie
Thrasher: Scleroderma I may write a book about my
childhood since I am blessed to use my fingers once again... |
| Carla:
CREST Syndrome and Fibromyalgia When I read some of
these stories, they scare the devil out of me. Is this really
that bad?... |
| Cindy:
Undifferentiated Connective Tissue Disease (UCTD) He
seems to think that I have Systemic Lupus Erythematosus,
but until my symptoms show more criteria for it, he can't
call it that... |
| Circadiano:
Limited Scleroderma with Raynaud's in One Finger (Italy)
About ten years ago she was diagnosed with lupus.... |
| Crissie:
Surviving Sister of Scleroderma Patient Seek out a
doctor who specializes in this disease as soon as you know
you have it... |
| Daphne:
Daughter of Scleroderma/Polymyositis/Antisynthetase Syndrome
Overlap Patient By early 2005, she began to exhibit
Raynaud's phenomenon. She was also having swelling in her
face, hands and feet... |
| Dave
Wilcher: Diffuse Scleroderma Early in 1998, I noticed
my hands were swollen. I had a hard time gripping the handle
of my coffee cup... |
| Dawna:
Raynaud's with CREST? I am in my mid forties and was
diagnosed with Raynaud's when I was about twenty-two... |
| Debbie
G: CREST, Lupus, Interstitial Lung Disease and Pulmonary
Hypertension It has been a very long and bumpy road
at times but somehow through all the hospital visits and
other illnesses I have managed to stay ahead of the game
by a step or two... |
| Debbie
M: CREST Scleroderma, Systemic Lupus, Rheumatoid Arthritis,
Ankylosing Spondylitis, and Fibromyalgia When we are
given the CREST diagnosis, does that mean that we definitely
will have the tight skin eventually? |
| Debby
B: Systemic Sclerosis I began experiencing unexplained
aches and fatigue, along with swelling and numbness in my
hands, at the end of 1999... |
| Dianne
R: Crest, Pulmonary Fibrosis Twelve years ago they
told me I would never see fifty and I have beaten them by
three years... |
| Donna
H: CREST, Autoimmune Hepatitis, Fibromyalgia I also
have degenerative disc disease, osteoarthritis, anxiety/depression/panic
disorder, irritable bowel... |
| Fykah:
Systemic Lupus Erythematosus (SLE) I am recently diagnosed
with Lupus, yet some complications are still under-diagnosed... |
| Gertie:
Systemic Scleroderma without Skin Involvement or Raynaud's She
looked thoughtful for a moment, then quietly asked "Is
there hope?" |
| 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... |
| Heidi:
Difficult Diagnosis of UCTD Do these symptoms resemble
the beginning symptoms for others who have gone on to be
diagnosed with scleroderma? |
| 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... |
| 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
S: Overlap Syndrome For as long as I can remember
I have had terribly dry skin and a very hoarse voice with
dry mouth... |
| 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... |
| Jennifer:
Surviving Daughter of Overlap Syndrome Patient This
letter was written by my dad and was read at my mother's
memorial service... |
| Jerri:
CREST Syndrome I was twenty-one years of age when
I first noticed that my fingers, toes and lips were turning
colors... |
| 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
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... |
| 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... |
| 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... |
| Judy
King: CREST Syndrome A neurosurgeon performed a Digital
Sympathectomy on my right hand and, thank God, my finger
was saved... |
| Karen
A: Morphea Scleroderma I am a 34-year-old female who
has been bounced around for 2-1/2 years from oncologists
to rheumatologists... |
| Kate:
Possible Scleroderma/Lupus Overlap At some point in
that dreary winter month, I began waking up with swollen
hands... |
| Kathi:
Scleroderma/Lupus I am forty-three years old and have
not been feeling well for ten years... |
| Kellie:
Overlap Scleroderma and Mixed Connective Tissue Disease (MCTD) I
am so relieved to read about so many people who have had
the same experiences... |
| Khai:
Mother of Diffuse Progressive Systemic Sclerosis Patient From
that time until now, scleroderma has dictated our lives.
The disease has attacked all lobes of the lungs on the right
side... |
| Kym:
Diffuse, CREST Scleroderma, Lupus and Fibromyalgia It
all started with Raynaud's in my fingers and toes when I
was about nineteen years old, in 1979... |
| Laura
M: UCTD A rheumatologist told me I did not look sick
and to "get a life"... |
| Laurie
(Bioteach): CREST Syndrome My first symptoms of this
disorder began with Raynaud's when I was in my mid twenties... |
| Lisa
C: Limited Scleroderma My mother has rheumatoid arthritis
(RA) and my thirteen-year-old daughter has what is believed
to be early lupus... |
| Lulu:
Lupus and CREST Scleroderma I thought that I was getting
lazy. It took all I could do to just get through the day... |
| Lynn:
Lupus, Scleroderma, Sjögren's and Polymyositis Overlap I
am going to start to see the doctor more often and take better
care of myself... |
| Lynsey:
Daughter of Patient with Scleroderma and Lupus My
mother has had all but four fingers amputated, all of her
toes on her left foot and her right leg up to her knee has
been amputated... |
| Mariposa:
Progressive Systemic Sclerosis I have finger ulcers,
also a second degree esophagitis, but I should say that about
a year ago it started receding thanks to the doctors that
follow my case... |
| Mary
S: Diffuse Scleroderma When he called the internist
I was in the office and I heard him say, "I think I
am sending you a patient who has scleroderma but I am not
sure. She has a lot of the symptoms." |
| McKenzie:
Scleroderma with CREST I felt numbness crept down
both my legs. I said, "I can't feel my legs!" and
sat down on the floor... |
| Mick
Breske: UCTD/Lupus I felt I was being treated as some
dumb blond. Finally one day I was referred to a rheumatologist... |
| Missy
S: Lupus, Scleroderma, CREST and Depression They say
I am not eligible for a medical card or disability. I have
been fighting for four years... |
| Myrianisa:
Daughter of a Severe Scleroderma Patient My mother
was diagnosed with scleroderma six years ago. At the same
time, she was also diagnosed with lupus, Raynaud's, MCTD,
pulmonary fibrosis and fibromyalgia... |
| Nathalie:
Lupus/Scleroderma I arrived at the hospital with two
black fingers. They had gangrene and I was very worried about
having an amputation... |
| Papa
V: Lupus, Antiphospholipid Syndrome, Myasthenia Gravis, and
Scleroderma About thirty years passed, and then—BAM!—I
got a heart blockage, stroke, liver biopsy due to elevated
enzymes, skin rash, high blood pressure, very high ANA.. |
| Pat:
CREST Scleroderma They had to do surgery and take
calcium deposits out of my knee... |
| Patty
S.:Localized Scleroderma, Pulmonary Hypertension and Sjögren's I
have quit my job and reduced my stress a hundred percent.
I am doting on my children and my husband... |
| Peggy
H: Undiagnosed MCTD? I have been told for twenty years
that I might have Mixed Connective Tissue Disease (MCTD),
but I haven't been definitely diagnosed... |
| Rafvis:
Systemic Scleroderma (Italy) There were practically
times when I had no sense of touch... |
| Robin:
Difficult Diagnosis My rheumatologist said I have
scleroderma, but just lately she said now she is not sure
if it is that or fibromyalgia... |
| Robin
E: Scleroderma, Lupus and Raynaud's I do not know
if I can describe what I am going through because it changes
each week, if not each day... |
| Rosemary
F: Surviving Daughter of Diffuse Scleroderma Patient She
tried to explain it, but it was hard for me to comprehend
the disease's symptoms. Mom said that it was the same thing
that her oldest sister died from... |
| Shar:
Lupus, Scleroderma, Sjögren's, and Fibromyalgia Was
my battle with Hepatitis C worth it? Yes! |
| Shirley
S: Surviving Spouse of Scleroderma and Lupus Patient My
husband John had scleroderma, and he passed away on November
8, 2001... |
| Silezia:
Mixed Connective Tissue Disease (South Africa) I believe
that if we try to feel positive about our life and the cards
we are dealt, then we can manage our disease most effectively... |
| Stacy
M: Scleroderma and Lupus I am only a thirty-three
year old male and I feel like I am eighty years old... |
| Susan
M: CREST, Raynaud's and Hashimoto's (Canada) I have
a fabulous doctor now and she has brought me from a very
dark place to one where I can again see the sunshine. |
| William
M: Scleroderma or Lupus I had to give up my career
of being a registered nurse (RN) over two years ago due to
total disability... |
| Yuri: CREST Syndrome Now, one month before my nineteenth birthday, I live with CREST Syndrome, rheumatoid arthritis, acid reflux and anemia... |
