CAREGIVER
RESOURCES: MAIN MENU |
|
| Survivors
of Scleroderma and Related Illnesses |
| In
Memory of Those We Have Lost |
| Stories from parents, siblings,
children, grandchildren, and friends who have lost loved ones
to scleroderma and related illnesses. |
| A.M.
Keyes: Surviving Daughter My father died on February
9, 2002 from pulmonary fibrosis, a complication of scleroderma... |
| 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... |
| Andy
P: Surviving Son of Fibrosing Alveolitis Sufferer The
hospital is blaming the fibrosing alveolitis, which they
say entered an aggressive phase two days before his death... |
| (Italiano)
Anghelita: Scleroderma di Zia Lia Non dimenticher
mai quel viso sofferente e amorevole con tutti. Questo avvenuto
nel 1984 io ero una ragazzina. Il ricordo di Zia Lia sempre
vivo in me... |
| 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... |
| Aziz:
Surviving Son of Gangrene Patient (India) What I am
writing now is something even more horrible than what you
might have read in a Stephen King's scariest of novels. My
father died of gangrene... |
| B.C.:
Surviving Daughter of Pulmonary Fibrosis Patient Immediately
after the diagnosis my father started to go downhill... |
| Bill
Jordan: Surviving Boyfriend of Scleroderma Patient Wendy
was heartset on dancing that evening even though she was
connected to an oxygen machine... |
| 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... |
| Brianne:
Surviving Daughter of Scleroderma Patient I think
I was eleven when my dad had to go to Edmonton, Canada, for
tests... |
| Candy:
My Mother Had Scleroderma My mother died from scleroderma
in October of 2001. For a long time, she had difficulty finding
a doctor who knew something about scleroderma... |
| Catherine
C: Surviving Daughter of Pulmonary Fibrosis Patient Less
than twelve months later, on September 8, 2005, my mum died
in the hospital, after suffering a collapsed lung three weeks
earlier... |
| Catherine
S: Surviving Daughter of Pulmonary Fibrosis Patient It's
been nearly nine months ago now. I miss my mother every day... |
| Cheryl:
Surviving Daughter of Systemic Sclerosis Patient Around
three o'clock in the morning when all her pain medication
finally gave her a reprieve, she looked over and asked me
to come sit next to her so that she could see me... |
| Chris
Beck: In Memory of My Mother, Veta Breit Can someone
help me? My hands hurt and get cramped sometimes when they
get cold... |
| Connie:
Surviving Daughter of Scleroderma Patient My mother
lived with scleroderma for 39 years and just passed away
on January 10, 1999, at the age of 52... |
| Corey
C: Surviving Daughter of Scleroderma Patient It was
a very long process and scary because she really did not
know what to expect next... |
| Crissie:
Surviving Sister of Scleroderma Patient Seek out a
doctor who specializes in this disease as soon as you know
you have it... |
| Debs
C: Surviving Daughter of Fibrosing Alveolitis Patient I
miss her terribly, but am thankful that she did not have
to live in a helpless state, which was her greatest dread... |
| Diane
M: MCTD, and Surviving Sister of Scleroderma Patient I
do not know what lies ahead for me on this path, I only hope
that I can be as strong as my sister was... |
| Dwight:
Surviving Son of Scleroderma Patient My dear mother,
Drema L Shaver, passed away one year ago today... |
| (Update)
Gerald: Spouse of Scleroderma Patient (In loving memory
of my mom, by Amy.) My mother passed on March 10, 2005, of
this disease. I am her youngest daughter, and I was there
when everything went downhill... |
| Grace:
My Mother's Fight Against Pulmonary Fibrosis I lost
my mum eight months ago, after a two-year fight against pulmonary
fibrosis... |
| Jamie:
Surviving Spouse of Progressive Systemic Sclerosis Patient My
husband Jerry, age 35, was diagnosed with scleroderma in
January 2000... |
| Jennifer:
Surviving Daughter of Overlap Syndrome Patient This
letter was written by my dad and was read at my mother's
memorial service in October of this year... |
| Joanne:
Diffuse Scleroderma (Now in memory of Joanne by Lis)
My hands became very swollen and I was unable to make a fist... |
| 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... |
| 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... |
| (Update)
Karen C: Daughter of Diffuse Scleroderma Patient But
now I am writing to tell you this pain has grown even more,
since my beloved father left this world... |
| (Español/Spanish)
(Update) Karen C: Hija de Paciente con Esclerodermia Difusa Pero
esta vez estoy escribiendo para contarles que este dolor
ha crecido aún más ya que mi papito se fue
de este mundo... |
| (Update)
Katie P: Surviving Daughter of Father with Scleroderma Our
father's battle ended on Sunday May 30, 2004 at 1:00pm. He
fought long and hard, but we know that he is in a much better
place with no suffering... |
| Keenan:
Surviving Son of Fibrosing Alveolitis Patient Dad
passed away now almost 4 years ago. It still hurts knowing
that I will never be able to ask his advice or listen to
his corny jokes again... |
| Keith:
Surviving Son of Scleroderma Patient In the fall of
1982 my mom was diagnosed with this dreadful disease and
it caused kidney failure... |
| Krista:
My Caregiver's Story All those years beside him, seeing
him suffering, being frustrated about the fact that I could
not do anything to help him... |
| LaVonne:
Surviving Mother of a Daughter with MCTD Hello, I
am the mother of an only daughter who had Mixed Connective
Tissue Disease (MCTD). She died in March 2000, at thirty-five
years of age... |
| (Italiano)
Lele: Mia Madre e Sclerodermia La storia riguarda
mia madre. E' morta il 04.05.72 all'età di 48 anni.
Oggi ricorre il suo anniversario. Cominciò a stare
male all'incirca l'anno precedente... |
| Linda
W: Surviving Daughter of Scleroderma Patient All she
wanted was for others to learn of this disease and know her
story. She requested this about two weeks before she died... |
| Lori:
Surviving Daughter of Father who had Scleroderma We
held his hands and told him how much we loved him and watched
him take his last breath at 5:50 p.m. on September 6, 2002... |
| Marie
C: Surviving Spouse of Scleroderma Patient I can only
say to other loved ones that, indeed, it was the hardest
thing I have ever gone through... |
| Maxine
D: Cousin of Scleroderma Patient Thank you for the
space to express my long awaited grief for m cousin Laurita... |
| Melinda:
Granddaughter of Systemic Scleroderma Patient My grandmother
was diagnosed with systemic scleroderma about twenty-five
years ago... |
| Michele
C: Surviving Daughter of CREST Patient My dad was
diagnosed only four months prior to his death with CREST
Syndrome... |
| Michelle
H: Sister, Daughter and Friend of Scleroderma Patients My
father's lips shrunk and his nose became pointy to the extent
we called it the bird disease as that is what he began to
look like... |
| Michelle
R: Surviving Daughter of Diffuse Scleroderma Patient I
always look at those first early years of my life as my mother's
last... |
| 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... |
| Noreen:
Surviving Mother of Fibrosing Alveolitis Patient (Manchester,
England) Alana gave us the most precious 14 months of our
life, and because of Alana we now look after profoundly handicapped
children... |
| Pearl:
Surviving Daughter of Pulmonary Fibrosis Patient We
watched her struggle daily to breathe, yet there was nothing
anyone could do, not even the doctor... |
| Raymond:
Surviving Son of Scleroderma Patient On September
31, 2002, my mother, Claudia Girouard, lost her courageous
fight with scleroderma... |
| (Italiano) Roberto:
La cognata che non ho mai conosciuto Questa non la
mia storia personale, ma la storia di Barbara, la sorella
della mia fidanzata, che non c' pi per poter raccontare la
sua storia, e vorrei farlo io al posto suo... |
| Rodger
Mansfield: Widower of a Diffuse Scleroderma Patient Fortunately,
Kathleen was able to get a quick and accurate diagnosis of
diffuse scleroderma... |
| 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... |
| Salina:
Surviving Granddaughter of Scleroderma Patient My
grandma died about two years ago from scleroderma. I am not
too sure when she was diagnosed, but when I was in the sixth
grade, we found out that she was sick... |
| Sara:
Surviving Daughter of Scleroderma Patient This is
the story of my mother who died on March 18, 1996, from complications
of scleroderma... |
| Shirley
S: Surviving Spouse of Scleroderma and Lupus Patient My
husband John had scleroderma, and he passed away on November
8, 2001... |
| Sonya:
Daughter-in-law of Diffuse Scleroderma with CREST Patient On
May 7, 2001, scleroderma took CB from us. My husband, a sister,
and both of CB's parents were by her side... |
| Star:
Widow of Scleroderma Patient I am 43 and I lost my
husband on October 7, 2001... |
| Sue:
Surviving Sister of a Scleroderma Patient It was December
1990 when the phone rang at my apartment early in the morning.
On the other end was my sister telling me she was diagnosed
with scleroderma... |
| Susan
Raby-Dunne: Surviving Daughter of Scleroderma Patient My
mother lived a fairly full and productive life for over thirty
years after her diagnosis. She danced with my father and
they were accomplished ballroom dancers... |
| Susi
Q: Surviving Daughter of Scleroderma Patient We were
told to go to the library and read about it... |
| Sylvia:
Surviving Mother of Scleroderma Patient She had this
disease from 2001 without the doctors realizing it... |
| Also see: Scleroderma
Patient and Caregiver Stories (Master Listing) |
| Support Groups |
| Support
Groups: Caregivers, family, friends, and survivors are
all very welcome at Scleroderma support groups. |
