| Systemic
Sclerosis: Diffuse Scleroderma |
| This page
was written by Shelley
Ensz, and medically edited by Dolores Vázquez-Abad,
M.D. . See Disclaimer. |
|
| What is Diffuse Scleroderma? |
| Diffuse Systemic Scleroderma is
also variously known as: Scleroderma (SD), Diffuse Sclerosis,
Diffuse Scleroderma, Diffuse Cutaneous Scleroderma, Systemic
Sclerosis (SSc), Progressive Systemic Sclerosis (PSS). |
| It also includes Scleroderma sine
Scleroderma (Scleroderma without Scleroderma), and the subset
of Familial Progressive Systemic Sclerosis (FPSS). |
| Causes of Scleroderma |
| Causes
of Scleroderma. The cause of scleroderma is generally
unknown, however areas being investigated include autoimmunity,
environmental exposures, genetics, and infections. Scleroderma
is not believed to be contagious; you cannot get it by hugging
or kissing someone or other intimate contact. However there
is an increased incidence of certain types of cancer among
scleroderma patients. (Also see: Associated
Conditions) ISN. |
| Diagnosis |
| Specific Proteins Identified in Whole Saliva from Patients with Diffuse Systemic Sclerosis (SSc). It is possible that some of them (whole saliva proteins) can be defined as new therapeutic targets or diagnostic markers for SSc disease. J Rheumatol 2007;34:2063-9. |
| Clinical subsets, skin thickness progression rate (STPR), and serum antibody levels in systemic sclerosis (SSc) patients with anti-topoisomerase I antibody. Anti-topo I antibody-positive patients with SSc with a rapid STPR have reduced survival rates, primarily due to early and often fatal renal and cardiac involvement. This information is important for managing physicians and researchers planning clinical trials involving patients with early dcSSc. (Wiley InterScience) Arthritis & Rheumatism.Volume 56, Issue 8 , Pages 2740 - 2746. July 30 2007. (Also see: Antibodies) |
| Antibodies to
RNA Polymerase III in Systemic Sclerosis Detected by ELISA. Anti-RNAP-III
autoantibodies were found in nearly 20% of SSc patients but in less than 1%
of controls, thus detection of this antibody is a useful marker to help diagnose
SSc. As well, this antibody has prognostic utility, since it is associated
with scleroderma renal crisis and the diffuse cutaneous form of SSc. J
Rheumatol 2007 July;34:1528-34. (Also see: Antibodies and Renal Involvement) |
| Scleroderma-clinical
and pathological advances. Skin sclerosis is no longer
regarded as mandatory for the diagnosis of systemic sclerosis.
It is likely that clinical trials performed over the next
few years will transform the management of systemic sclerosis
and help to dispel its reputation as one of the least treatable
of the autoimmune rheumatic diseases. PubMed. Best Pract
Res Clin Rheumatol. 2004 Jun;18(3):271-90. (Also see: Limited
Scleroderma, and Prof.
Carol Black) |
| Diffuse Scleroderma is diagnosed
whenever there is proximal tight skin. Proximal means located
closest to the reference point. And here is where the plot
thickens for Scleroderma patients who have skin tightness only
between their wrists and their elbows, because there are two
different definitions of what the reference point should be
when bandying about this proximal word: |
| 1. The American
College of Rheumatology defines proximal tight skin as
skin tightness above the wrists.(1) |
| 2. Dr.
LeRoy defines proximal tight skin as skin tightness above
the elbows. Europeans and many centers in the United States
use this definition for proximal tight skin.(2) |
| Therefore, someone with skin tightness
only between their elbows and their wrists will receive a diagnosis
of either Diffuse or Limited Systemic Scleroderma, depending
on which definition of "proximal" their doctor uses. |
| The diagnosis is clinical, and
requires no laboratory or special testing. |
| Nailfold
Capillaroscopic Findings in Systemic Sclerosis Patients. Nailfold
capillaroscopy is a useful technique in patients with clinical
suspicion of SSc diagnosis, and may identify patients with
severe visceral complications. B. Joven. FRI0360 EULAR
2006. (Also see: Raynaud's) |
| Diffuse Scleroderma
Without Skin Involvement |
| Sometimes Diffuse Systemic Scleroderma
leaves the skin and joints untouched, and affects only the
connective tissue of the digestive system or some other internal
body system. In the absence of visible skin involvement, "Scleroderma
sine Scleroderma," is diagnosed, which basically means "Diffuse
Scleroderma without Scleroderma (skin involvement)." |
| Systemic
sclerosis sine scleroderma associated with Wolff-Parkinson-White (WPW)
syndrome. This case highlights cardiac
arrhythmia caused by WPW syndrome as a clinical manifestation of
the heart in ssSSc. PubMed. Scand J Rheumatol. 2007 Jan-Feb;36(1):68-70.
(Also see: Cardiac Involvement) |
| Unique
characteristics of systemic sclerosis sine scleroderma-associated
interstitial lung disease. In the presentation of an
idiopathic interstitial pneumonia, the presence of a nucleolar-staining
ANA, telangiectasia, Raynaud phenomenon with abnormal capillaroscopy
findings, gastroesophageal reflux, or pericardial disease
suggests underlying systemic sclerosis.. PubMed. Chest.
2006 Oct;130(4):976-81. (Also see: Pulmonary
Fibrosis, and Pulmonary
Involvement) |
| Clinical
Features of Scleroderma Sine Scleroderma-Associated Progressive
Interstitial Lung Disease (ILD). Scleroderma may present
as progressive interstitial lung disease without the characteristic
skin-tightening features of scleroderma. Scleroderma sine
scleroderma-associated progressive ILD is associated with
a high prevalence of telangiectasias, Raynaud’s with
abnormal nailfold capillaroscopy, esophageal dysmotility,
nucleolar-staining ANA, anti-Th/To-antibody positivity, echocardiographically-defined
pulmonary hypertension, and asymptomatic pericardial disease. Aryeh
Fischer. 1574/350. ACR 2005. (Also see: Pulmonary
Fibrosis) |
| In Scleroderma sans Scleroderma,
Raynaud's may or may not be present. The usual presentation
is with pulmonary (lung) fibrosis, and/or Scleroderma renal
(kidney) crisis, and/or cardiac (heart) disease, and/or gastrointestinal
disease. Antinuclear antibodies (ANA) may sometimes (but
not necessarily) be present (Scl-70, ACA.) |
| Scleroderma
sine scleroderma. MedicineNet |
| Complications |
| Diffuse Systemic Scleroderma causes variety of complications that can affect the skin, mouth, eyes and
internal organs such as the lungs, heart, kidneys,
and the entire gastrointestinal tract. See Scleroderma
Symptoms and Treatments. |
| Oral complaints in progressive systemic sclerosis: two cases report. Aesthetic and facial dysfunction are followed by important oral and facial manifestation of disturbances such as xerostomia, the lack of saliva in the mouth, and its associated complications. (PubMed) Med Oral Patol Oral Cir Bucal. 2008 Feb 1;13(2):E114-8. (Also see: Dental Involvement) |
| Skin Thickness Progression Rate (STPR) in Systemic Sclerosis with Diffuse Cutaneous Involvement: A Predictor of Outcome. Rapid STPR at first evaluation in early dcSSc patients is a predictor of both internal organ involvement at one year after onset of skin thickening and 5 year mortality. Assessment of individual risk in dcSSc patients and planning of clinical trials involving these patients should include evaluation of STPR. (Also see: Mortality and Prognosis and Skin Fibrosis). |
| Clinical
and Immunological Features in Patients with Systemic Sclerosis. There
are differences in clinical and immunological findings between
diffuse scleroderma (dSSc) and limited scleroderma (lSSc):
severe capillary damage, arthralgia, muscle weakness, tendon
friction rubs, joint contractures, esophageal, pulmonary,
cardiac and renal involvement are more common in pts with
dSSc. S. Arsik. AB0194 EULAR 2005. (Also see: Types
of Scleroderma and Limited
Scleroderma) |
| Kidney
crisis in systemic sclerosis. This occurs in the group
of patients with rapid and aggressive course of the disease,
often after several years of the ailment and with the diffuse
form. Scleroderma renal crisis (SRC) is most frequently characterized
by malignant hypertension, renal insufficiency, and less
often by the symptoms of microangiopathic hemolytic anemia. PubMed.
Rocz Akad Med Bialymst. 2005;50 Suppl 1:294-6. (Also see: Renal
Involvement) |
| Prevalence
of Elevated Pulmonary Arterial Pressures Measured by Echocardiography
in a Multicenter Study of Patients with Systemic Sclerosis. Elevated
pulmonary arterial pressures (PAP) are common in both limited
and diffuse SSc disease, occurring in 21% of limited and
26% of diffuse SSc patients. A high index of suspicion is
important and routine echocardiography in symptomatic patients
may allow earlier diagnosis of PAH and intervention. J
Rheumatol. 2005 July;32:1273-8. (Also see: Pulmonary
Hypertension, Diffuse
Scleroderma, and ISN
Medical Advisory Board: Dr. Janet Pope) |
| Delayed
gastric emptying in patients with diffuse versus limited
systemic sclerosis, unrelated to gastrointestinal symptoms
and myoelectric gastric activity. The higher prevalence
of delayed gastric emptying in patients with dSSc in this
study indicates a more severe involvement of the gastrointestinal
tract in dSSc than in lSSc, and stresses the importance of
differentiating between the subtypes of SSc patients. PubMed.
Scand J Rheumatol. 2003;32(6):348-55. (Also see: Gastrointestinal
Involvement) |
| Kidney
disease other than renal crisis in patients with diffuse
scleroderma. Patients with diffuse scleroderma but without
renal crisis rarely have significant increases in serum creatinine
or proteinuria that cannot be explained by other etiologies.
These patients should be carefully evaluated for non-scleroderma
causes of kidney disease. J Rheumatol. 2005 Apr;32(4):649-55.
(Also see: Kidney
Involvement) |
| Progression |
| About 95 percent of people with
Diffuse Systemic Scleroderma show some early thickening and
hardening of the skin, especially of the hands, arms and/or
face. This is due to the increased production of fibrous scar
tissue. Widespread skin involvement more often results in severe
internal organ damage than in patients with less skin involvement. |
| Usually, the skin on the fingertips
tightens first, then progresses to the fingers, hands, forearms,
and upper arms. By the time the skin of the arms is tight,
there may be stiffness of the legs, thighs, and in some cases,
chest and abdomen. The skin tightness usually appears
on both sides of the body and is symmetrical. The skin of the
face and neck may also become involved. See Scleroderma
Photos. |
| Using a self-reported functional score (FS) to assess disease progression in systemic sclerosis (SSc). The FS is a disease-specific, inexpensive and practical instrument for assessing functional status in SSc. It is a promising self-administered assessment tool for use in evaluating new SSc treatments. Rheumatology Volume 46, Number 7 Pp. 1107-1110. (Also see: Limited Scleroderma, and CREST) |
| Anti-neutrophil
cytoplasmic autoantibody-associated rapid progressive glomerulonephritis
complicated with both limited and diffuse scleroderma.PubMed.
Nihon Rinsho Meneki Gakkai Kaishi 2002 Dec;25(6):473-9 (Also
see: Limited
Scleroderma) |
| Different
Clinical Features in Patients with Limited and Diffuse Systemic
Sclerosis. Loss of capillaries (detected by nailfold
capillaroscopy), digital ulcers, interstital lung fibrosis,
degreased FVC and DLCO, esophageal hypomotility, musculoskeletal
impairment, heart and renal involvement are more common in
patients with diffuse scleroderma. Fingertip osteolysis,
telangiectasia and arthritis are equally frequent in both
forms of disease. P. Ostojic. FRI0290 EULAR 2004. (Also
see: Limited
Scleroderma) |
| Treatment |
| Scleroderma
Treatments and Clinical Trials. ISN. |
 Scleroderma
Care and Research Journal (PDF) This inaugural issue
for physicians focuses on elevating the standards of care
for scleroderma lung involvement. Articles include Interstitial
Lung Disease in Systemic Sclerosis: Optimizing Evaluation
and Management, as well as Pulmonary Hypertension
Related to Systemic Sclerosis: A Primer for the Rheumatologist. Journal
of the Scleroderma Clinical Trials Consortium (SCTC) Vol
1, No. 1, Autumn 2003 (Also see: Pulmonary
Fibrosis and Pulmonary
Hypertension) |
| High dose cyclophosphamide without stem cell rescue in scleroderma. High dose cyclophosphamide without stem rescue can lead to clinically significant improvement in skin score and measures of disease severity in patients with diffuse cutaneous scleroderma. PubMed. Ann Rheum Dis. 2007 Nov 1. (Also see: Clinical Trials, and Medications) |
| The
efficacy of oral cyclophosphamide plus prednisolone in early
diffuse systemic sclerosis. This open study supports
the use of oral cyclophosphamide plus prednisolone therapy
to prevent fibrosis and its complications in the early stages
of diffuse SSc. PubMed. Clin Rheumatol. 2003 Oct;22(4-5):289-94. |
| Autologus
peripheral stem cell transplantation in a patient with diffuse
systemic sclerosis: our experience. The one-year follow-up
has shown an essentially good response with the improving
of the skin involvement and of the subjective indicators
of the disease, while the pulmonary involvement doesn't seem
modified from the high dose therapy. PubMed. Reumatismo.
2004;56(1):51-6. (Also see: Stem
Cell Transfusions) |
| References |
| (1) Paper for ACR criteria: Subcommittee
for Scleroderma criteria of the American Rheumatism Association
diagnostic and therapeutic criteria committee. 1980. Preliminary
criteria for the classification of systemic sclerosis (Scleroderma). Arthritis
Rheum. 23,581:590. |
| (2) Paper for LeRoy's criteria:
Kahaleh MB, Sultany GL, Loadholt CB, Smith EA, Huffstutter
JE, and LeRoy EC. 1986. A modified Scleroderma skin scoring
method. Clinical & Experimental Rheumatology. (4):367-369. |
| Diffuse Scleroderma
Patient & Caregiver Stories |
| Amanda: Diffuse Scleroderma Systemic Sclerosis I am
thirty-nine years old and was diagnosed with diffuse scleroderma systemic
sclerosis in August 2007... |
| Ana
Lucia: Diffuse Scleroderma I am twenty years old and
I was diagnosed with diffuse systemic scleroderma a year
and a half ago... |
| (Español/Spanish)
Ana Lucia: Esclerosis Sistemica Difusa Estoy en tratamiento
de corticoides. Y ciclofosfamida llevo un año y medio
en hospitales he tenido que ingresar... |
| Anastasia:
Surviving Granddaughter of a Diffuse Scleroderma Patient We
went everywhere to figure out what she had but no one knew.
Traveling to a different hospital finally we heard scleroderma... |
| Angela
M: Diffuse Scleroderma The rheumatologist that treats
me says it is due to the illness, but my orthopedist says
it is a problem that should be operated... |
| Annette:
Diffuse Scleroderma I can see where having
friends who understand what I am going through would be a
big help... |
| Archie
Bailey: Scleroderma: Sue's Story Time has passed since
Sue's death. Only those who have experienced the grieving
process can understand the profound agony death presents
to friends and loved ones... |
| 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... |
| 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
Jordan: Surviving Boyfriend of Scleroderma Patient Wendy
was heartset on dancing that evening even though she was
connected to an oxygen machine... |
| Carmen
Rijos: Systemic Scleroderma Carmen is in need of a
stem cell transplant for scleroderma. This is a request for
donations for the Carmen Rijos Private Foundation... |
| Carlos S: Son of Father with Diffuse Systemic Sclerosis (Diffuse Scleroderma) My father
is a simple man, he works the land, and does not have a great degree
of schooling, but if there is something he has been taught is to never
give up... |
| (Español/Spanish) Carlos S: Hijo- Sistémica Difusa Mi papá es un hombre simple, del campo, no tiene muchos estudios, pero si hay
algo que a él no le enseñaron fue a desistir... |
| Carol
Langenfeld: Diffuse Scleroderma (Carol is co-author
of the book Living
Better : Every Patient's Guide to Living with Illness) People
tell me that I have earned my credentials as a "certified
patient" the hard way after more than twenty-three years... |
| Christine
S: Diffuse Stage 2 Scleroderma I did not know whether
to break out the tissues or the champagne or both! I was
so happy that finally someone had agreed that had something
wrong with me, and that it had a name... |
| Cindy
Fuchs-Morrissey: Mother of a Progressive Systemic Sclerosis
Child Hilary has an aggressive form of scleroderma
with swallowing problems, bowel problems, fatigue, acral
bone dysplasia of the hands and feet... |
| Connie:
Surviving Daughter of Scleroderma Patient My mother
lived with scleroderma for thirty-nine years and just passed
away on January 10, 1999. at the age of fifty-two... |
| Crissie:
Surviving Sister of Scleroderma Patient Seek out a
doctor who specializes in this disease as soon as you know
you have it... |
| Cynthia:
Diffuse Scleroderma I was so stressed out over having
this disease that I could not eat. I lost weight and I lost
my strength... |
| Darlene:
Diffuse Scleroderma (New Jersey) Now that I have become
more knowledgeable about scleroderma, I feel I can cope with
it better... |
| 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... |
| Deborah
Peck: Diffuse Systemic Sclerosis I first noticed my
hands turning white in 1992 after my father's funeral... |
| Del:
Deaf with Systemic Scleroderma Is anyone out there
like me? It's my hope and wish to make contact with someone
else who is also Deaf with SD... |
| Denise
E: Diffuse Scleroderma I was first diagnosed with
diffuse scleroderma in February 2002, but my symptoms began
subtly in the summer of 2000... |
| Elizabeth
G: Diffuse Scleroderma I was fired from my job since
I cannot work as I used to... |
| Elva:
Mother of Diffuse Scleroderma Patient My son is unable
to put on his own socks and shoes. He is very tired, and
has tremendous pain... |
| (Italiano)
Gabriela: Scleroderma Diffuse Mi chiamo Gabriela,
ho 17 anni e abito a Londra. Sono stata dignosticata con
Scleroderma e Raynaud's Phenomenon quando avevo 15 anni... |
| Gazea:
Diffuse Scleroderma I would like to at least try to
suggest a small ray of hope for other sufferers of diffuse
scleroderma... |
| Greg:
Diffuse Scleroderma and Lung Transplant Patient I
asked Dr. Frank C Arnett to see if I was a candidate for
a lung transplant... |
| Helen
P: CREST Scleroderma I was diagnosed ten years ago
when the symptoms kicked in with a vengeance following a
very traumatic personal tragedy... |
| Jacquie:
Diffuse Scleroderma I am fifty-six years old and I
was diagnosed with systemic scleroderma in November of 2003,
right when menopause hit... |
| Jamie:
Surviving Spouse of Progressive Systemic Sclerosis Patient My
husband Jerry, age 35, was diagnosed with scleroderma in
January 2000... |
| (Español/Spanish)
Jeins: Esclerodermia Sistemica Difusa y Dermatopolimiositis Mi
piel quedo muy sensible y quede con cicatriz en las manos
y muchos dolores en las articulaciones, pero no importa... |
| Jennifer
Weldon: Systemic Scleroderma/Stem Cell Transplant Patient I
was put on a ventilator and complete life support. I had
five open heart surgeries, and suffered severe nerve damage
in my right leg... |
| Jewell:
Diffuse Progressive Systemic Sclerosis When I think
back, I had been getting sick for a long time. I just did
not know it... |
| Joanne:
Diffuse Scleroderma My hands becoming very swollen
and I was unable to make a fist. My doctor prescribed water
pills as he thought I was just retaining water... |
| 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. Has anyone else out there been a custodian
and now suffers this affliction? |
| John
B: Eosinophilic Fasciitis or Scleroderma-Like Condition I
have knee contractures that prevent me from walking, very
tight skin in the legs... |
| Judy
Dee: Diffuse Scleroderma My skin began to harden and
turn a shade of brown... |
| 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... |
| Judy
Rose Thompson: Diffuse Scleroderma with CREST He told
me that 1 in 200 people get a disease in their lifetime,
and that Scleroderma was like having 20-30 diseases at once... |
| Kappy:
Sister of Diffuse Scleroderma Patient So now, I offer
my sister's story with the belief that it too will inspire
the same hope I once found... |
| Karen
C: Daughter of Diffuse Scleroderma Patient (Chile)
My father is Juan, he's fifty-two and suffers from diffuse
scleroderma... |
| Karen
M.R.: Diffuse Scleroderma and Fibromyalgia I was so
glad she was there, because I sort of went into shock when
the doctor said she was going to start me on chemo treatments... |
| Karen
T: Daughter of Progressive Systemic Scleroderma Tubal
feeding does not look scary, and it is not the beginning
of the end; instead, it is a new beginning for her... |
| Kasey:
Daughter of a Diffuse Scleroderma Patient The hardest
part for my mother is accepting that she does have scleroderma
and needs to face the facts about it... |
| Kaycee:
Diffuse Scleroderma with Polymyositis The rheumatologist
confirmed the diagnosis of diffuse scleroderma on my initial
visit to him. Since then, I have had a muscle biopsy, which
confirmed polymyositis... |
| 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... |
| Krissy:
Systemic Scleroderma/Stem Cell Transplant Patient Our
home is like a hospital. We have oxygen tanks for when I
need extra help breathing, and a lovely kangaroo pump which
is how I get my continuous feeding in me... |
| 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... |
| Lisa
V: Diffuse Scleroderma and Raynaud's When I first
got sick, I thought I was dying. My fingers started hurting
really bad... |
| Lynn
S: Diffuse Scleroderma and Pulmonary Hypertension No
one believed me; I guess because I look healthy. I would
always hear, 'You are too young for this!' It is hard for
people to understand... |
| Marilyn: Diffuse Scleroderma Being
that I was a nurse you would think that I should have picked
up on this myself... |
| (Italiano:)
Maria Cristina: Sclerodermia Sistemica Progressiva Mi
stata diagnosticata all'et di 14 anni una Sclerodermia Sistemica
Progressiva ad uno stadio molto avanzato con una aspettativa
di vita minima (si parl di 6 mesi)... |
| 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." |
| Mary
Theresa: Daughter of Diffuse Scleroderma with CREST Patient Over
the years we had all been in denial, ignoring the fact that
we knew that she had a serious disease that can be fatal... |
| Michelle
R: Surviving Daughter of Diffuse Scleroderma Patient I
always look at those first early years of my life as my mother's
last... |
| Mike
Thomas: Diffuse Scleroderma The doctors keep passing
me around saying that I am too complicated for them to treat.
So nothing gets done... |
| Missy
K: Diffuse Scleroderma (South Africa) I am on chemotherapy
and often feel sick. I would like to correspond with other
sufferers... |
| Moomary:
Diffuse Scleroderma The endoscopy showed that my esophagus
does not close at all when I swallow. The surgeon suggested
that he could do a Nissen Fundoplication... |
| Nickole:
Surviving Daughter of Diffuse Scleroderma Mother I
am not sure how long my mother had scleroderma, but I do
know that the doctors did not know much about it at the time... |
| Pam
M: Diffuse Scleroderma, CREST and Raynaud's I went
to a rheumatologist and after she had almost killed me with
all the tests and drugs for a year, she threw her hands up
and said there was nothing else she could do... |
| Rodger
Mansfield: Widower of a Diffuse Scleroderma Patient Fortunately,
Kathleen was able to get a quick and accurate diagnosis of
diffuse scleroderma... |
| Rose:
Diffuse Scleroderma The decision to amputate was made,
and the pain that kept me up in tears all night, every night
was finally gone... |
| Rosebud:
Diffuse Scleroderma My hands are the worst. They are
completely swollen, red, itchy, with burning sensation and
in pain constantly... |
| 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... |
| Sandy:
Diffuse Scleroderma After years of complaining about
various symptoms to doctors, I was diagnosed with Diffuse
Scleroderma in 1993... |
| Serena:
MCTD/Diffuse with CREST During her 20 years from onset
to diagnosis, her Calcinosis was diagnosed as fungus... |
| Sherrill:
Diffuse Systemic Scleroderma (New Zealand) I could
no longer walk, due to knee contractures. My hands resembled
claws. I had elbow contractures and neck contractures, and
could not straighten my arms... |
| Sparky:
Diffuse Scleroderma My pulmonary disease worsened
only slightly over the past year. I now face the decision
to take cytoxan... |
| Steve
D: Diffuse Scleroderma (England) My symptoms started
in 1993, when I noticed my fingers would start to get cold
even though it was summer and the temperatures were mild... |
| Sue D: Diffuse Scleroderma Pain developed in my hands, then I noticed pain in my knees, then my shoulders, down my back, elbows, hips, feet... |
| Sujatha:
Diffuse Systemic Sclerosis (Bangalore, India) I am
36 years old and hail from Bangalore in the Southern State
of Karnataka in India... |
| Susan L: Diffuse Scleroderma I first noticed the swelling in my hands and feet shortly after my daughter was born in 2005, and thought that it was post-pregnancy fluid... |
| Syl:
SD/Crest/PH/Sjögren's The physician's assistant
noticed that my hands went really blue... |
| Tata P: Diffuse Scleroderma I am thirty-two years old, and I have been suffering
this illness since I was nine... |
| (Español/Spanish) Tata P: Esclerodermia Difusa Hola,
tengo 32 años, y padezco esta enfermedad desde los
9... |
| Tina
Lech: Diffuse Scleroderma, Fibromyalgia, Pineal Cyst I
was a very active, alive, mother of three who were all in
school. I was out playing baseball... |
| Tommi:
Diffuse Scleroderma I would like to talk with others
who have heart involvement... |
| Trish:
Spouse of a Diffuse Scleroderma Patient My husband
was diagnosed with scleroderma in June of 2000. We had never
heard of the disease before, but boy do we know alot now
thanks to this site... |
| Sonya:
Daughter-in-Law of Diffuse Scleroderma Patient I think
that we all need to give her permission to die. I believe
CB is hanging on for everyone else... |
| (Italiano)
Viola: Sclerodermia Sistemica Diffusa Sono una ragazza
di 22 anni; all'et di 12 anni all'improvviso mi sono comparse
delle macchie violacee sul ginocchio sinistro... |
| Yolima:
Diffuse Scleroderma I was misdiagnosed for more than
a year with so many diseases and given all types of medication
for different problems except for the real disease... |
