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Scleroderma Survivor Stories

In Loving Memory of Those We Have Lost

These are heartfelt personal stories from parents, siblings, children, grandchildren, and friends who have lost loved ones to scleroderma and related illnesses. Many of them are featured in our Voices of Scleroderma book series.

JonquilsA.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 thirty-nine years and just passed away on January 10, 1999, at the age of fifty-two…

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…

Julie T: Surviving Daughter of a Diffuse Scleroderma Patient Our family deals with most difficult situations with laughter and humor, even in the most trying times…

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 four 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…

Manu: Daughter of Patient with Systemic Scleroderma (Italy) I recently lost my father, and in his last moments he suffered very much. He was affected by systemic scleroderma that began with simple inflammation of his hand in November of 2006…

(Italiano) Manu: Figlia di Padre Malato di Sclerodermia Sistemica (Italia) Ho perso mio papà una settimana fa, dopo atroci sofferenze. Era affetto da sclerodermia sistemica iniziata con un banale gonfiore di una mano nel novembre 2006…

Maria T: Daughter of Deceased Scleroderma Patient (Italy) He, upon looking at my mom's face and hands diagnosed her with sclerodermia, in fact he took care of her until the end…

(Italiano) Maria T: Figlia di una Paziente Defunta di Sclerodemia (Italia) Lui, come vide a mia madre disse "tu hai la sclerodermia", guardandole le mani e la faccia…

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…

Sonya D: Surviving Daughter of Systemic Scleroderma Patient (Portugal) She had difficulty eating, drinking and digesting her food, but yet doctors had no clue…

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.

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In Loving Memory

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