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Caregivers...where would we be without you? You help us in a million different ways, yet often your efforts go unacknowledged. Share your story with us!
Caring for the Caregiver
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Caregiver Stories
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Caring for the Caregiver

Caregivers by Dee Dee Hunt. ISN.
Family caregivers live longer than their peers. Caring for a disabled family member can be overwhelmingly hard. But caregivers may live longer than those who don't bear such responsibilities, new research suggests. Chicago Tribune, 10/18/2013.
Skin and Mucosa Care in Systemic Sclerosis (SSc) Patients and family caregivers benefited from the individualized and SSc-specific education on skin and mucosa care. PubMed, Musculoskeletal Care. 2013 Mar 27.
The Reluctant Caregiver. Elder care can be a wonderful experience, satisfying and meaningful, but guilt and resentment are also standard parts of the job description, at least occasionally. The New York Times. 02/20/2013.
For Some Caregivers, the Trauma Lingers. There is little research on this topic, which suggests that it is overlooked or discounted. But several experts acknowledge that psychological trauma of this sort does exist. The New York Times. 01/30/2013.

Grief/Bereavement

Scleroderma Survivors Resources and support for those who have lost a loved one to scleroderma or related illnesses. Features stories from survivors. You may read stories and/or submit your own story to remember someone you have lost. The stories help to raise awareness of the illness and the desperate need for a cure, and also provide comfort and support to others who are grief-stricken.

Online Support: Chats, Stories

"Surviving the impact of scleroderma means developing a psychological coping strategy, a kind of temporary agreement with ourselves that does not deny pain, anger and hurt, neither does it blitz these emotions out onto others."
-- Michael Thorpe, Sclero Forums Blog
Video Introduction to Sclero Forums Chats, Blogs and Videos. Sclero Forums provides well moderated support for scleroderma patients and caregivers. Do you care for someone with scleroderma? Then join us today. It's fun, it's free, and it's helpful! Presented by Amanda Thorpe. ISN.
Michael Thorpe Blog on Sclero Forums. Michael's astute observations and insights, as both a therapist and a caregiver, explore the full range of issues as well as the particular joys of being a scleroderma caregiver. Sclero Forums Blog. (Also see: ISN Representative Michael Thorpe)
Michael Thorpe: Caregiver Support Blog. Michael Thorpe has been a caregiver for his wife Amanda since she was diagnosed with scleroderma in 2007 and knows firsthand how difficult and even isolating that it can be. Scleroderma Society UK.
Caregiver Stories are very welcomed here, as are tributes to caregivers. Please help us raise awareness of the vital role of caregivers by submitting your story. ISN.

Respite Care Services

(United States) ARCH National Respite Network and Resource Center. Respite is planned or emergency care provided to a child or adult with special needs in order to provide temporary relief to family caregivers who are caring for that child or adult. ARCH.
(United Kingdom) Secure Sitting Service Ltd provides respite for carers, enables the person being cared for and provides companionship for individuals living alone in the U.K. SecureSitting.

Caregiver Stories

Adriana: Daughter of Scleroderma Patient My mother is the most beautiful woman I know...
Allen's Mom: Son has Scleroderma With his tightness of skin he has a very hard time bending, walking up the stairs and for the most part he cannot walk for more than a few minutes without his legs giving out...
Amy: Daughter of Systemic Sclerosis Patient: What is Scleroderma? Imagine for me if you would that in certain areas of your body the skin has begun to thicken and harden. Then on top of this, you have a painful sensitivity to cold, frequent heartburn, stiff joints and various other internal problems...
Andrea: Girlfriend with Raynaud's Syndrome (Italy) It started a few months ago when my girlfriend started finding strange spots on her hands when it was cold, they would turn purple...
(Italiano) Andrea: Fenomeno di Raynaud Acutissimo Da alcuni mesi alla mia ragazza sono comparse sulle mani delle strane macchie che nei periodi di maggior freddo...
Angela: Mother of Linear Scleroderma Patient We are in search of others who know how to handle the pain and muscle spasms in her legs...
(Dutch) Angélique: Dochter van een Sclerodermie Patient (CREST) Mijn moeder heeft het crest-syndroom. Is 64 jaar en heeft sinds de diagnose 7 maanden in het ziekenhuis gelegen vanwege allerlei complicaties...
Anita A: Sister of Systemic Scleroderma Patient She has had a heart transplant and a kidney transplant. It has been amazing to our family the courage and stamina that she has through all that she has endured...
Annabella: Mother of Daughter with Linear/Morphea Scleroderma A mother's intuition never fails. When I first noticed the marks on my little girl's left thigh during bath time last summer, I got a sick feeling in my stomach...
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...
B. A. McKinny: Mother of Atrophoderma of Pierini and Pasini Patient My seventeen-year-old daughter was told she had Atrophoderma of Pierini and Pasini (APP) last year...
Bernarda: Mother of a Localized Morphea en Coup de Sabre Patient She still is not fully conscious of what is happening, while I am devastated...
(Español/Spanish) Bernarda: Morfea Localizada-Golpe de Sabre Fue un golpe tremendo para mí, ella aún no toma plena conciencia de lo que le pasa, yo estoy destrozada...
Bregan: Mother of Daughter with Morphea (New Zealand) My fourth child, who is now seven years old, has just been diagnosed with Morphea...
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 People tell me that I have earned my credentials as a "certified patient" the hard way after more than twenty-three years...
Caroline: Niece of Scleroderma Patient We are trying to get my aunt into a nursing home...
Catherine: Mother of Linear Scleroderma Patient Emma's linear scleroderma started on her left cheek at the age of four years and by the time she was eight that side of her face was quite deformed...
Cathy B: Spouse of Scleroderma Patient I am looking for other wives who might be in the same need I am in, who also want someone to talk to and share stories or ideas with...
Chris S: Mother of Linear Morphea Patient Whatever it was, I knew it should not be there...
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...
Claudia: Systemic Scleroderma Nature is wise, no doubt about it, when something is wrong with our body we have to pay attention...
(Italiano) Cristinia: Figlia di una donna affetta dalla sclerodemia Da 9 anni soffre di questa malattia e da 6 segue una cura a Padova, la plasmoferesi, con questa cura finalmente ha smesso di soffrire...
Danene: Daughter of CREST Scleroderma Patient Especially knowing that your loved one may eventually die from this disease...
(Italiano) Daniela: Figlia di una donna afetta da sclerodermia Il danno che ha fatto questa malattia a noi figli e a mia padre che è morto a soli 47 anni è stato incalcolabile...
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...
Daphne M: Daughter of Limited Systemic Scleroderma Patient She has had symptoms of reflux, which has caused her to throw up every night for over ten years. Her hands turn blue and are very sensitive to hot and cold. She has been developing ulcers on her fingers too. She was admitted to CCU last week with difficulty swallowing and breathing...
Dave S: Undiagnosed and Brother of Scleroderma Patient A small black spot appeared on my left index finger around Easter of 2004. It has not grown in the past six months, but it also has not healed...
Debbie B: Mother of Linear Scleroderma Patient (Australia) The disease is in her muscles and the right leg has stopped growing. Her right foot is 2 cm shorter then her left and she is always in pain...
Debbie W: Mother of Linear Scleroderma Patient Because my daughter's face was being affected so severely with atrophy, hair loss, and partial loss of her eyebrow we began a treatment program...
Debra K: Daughter of Scleroderma Patient (Canada) I wish that there was something I could give her from my healthy body...
Debra R: Mother of Emma, Linear Scleroderma Patient It is so good to have support and be able to ask questions and have them answered. Now I can explain to Emma what is going on...
Dee: Daughter of Scleroderma Patient Three years ago my mother was diagnosed with scleroderma. My aunt died of scleroderma last year...
D.M.: Son of Mother with Doubtful Diagnosis (Kosovo, Yugoslavia) I will do my best to help my mother. She is the only person I have in this world...
Dot: Mother of Morphea/Linear Patient I have read many of the stories posted and have felt encouraged by them...
Ed: Father of a Linear Morphea Patient A series of medications, steroids and creams has been applied, but Erwin's case seemed to be worsening...
Erica: Mother of Daughter with Linear/Morphea Scleroderma She went there with one spot and now she has them all over both arms, one hand, her back, knee and thigh...
Giovanna: Sister of Morphea Scleroderma Patient My name is Giovanna Petrachi, and I am from Italy. My sister (who is 35 years old) has had Morphea for over 10 years now...
Halina: Mother of Daughter with Morphea (Poland) My daughter was four, when I discovered a small spot on her left foot...
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...
Jo: Mother of a Child with Morphea Scleroderma Last year during the summer we noticed that our daughter had a blotchy, purple/red "rash"...
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?
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)...
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...
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...
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...
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...
K. Thompson: Daughter of Scleroderma Patient He had been having problems with his heart and had to have stents put in for blocked arteries...
Kamlesh: Husband of Limited Scleroderma Patient (India) In a pulmonary function test, there was severe restriction and severe obstruction...
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: Mother of Generalized Guttate Morphea Patient As the mother of ten-year-old daughter who has been struggling with what she refers to as "weird skin", I was so pleased to come across this web site to share our story...
Karen C: Daughter of Diffuse Scleroderma Patient (Chile) My father is Juan, he's fifty-two and suffers from diffuse scleroderma...
Karen G: Spouse of Scleroderma Patient My husband has scleroderma and we would like to know if anyone has ever had an Iloprost infusion...
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...
Karina: Mother of Morphea Patient The doctor says it will be under control, and that it is a good thing that it is localized and hasn't spread...
(Español) Karina: Esclerodermia Localizada Morfea/Madre de Paciente Finalmente hace unos días me dieron el resultado, estoy un poco asustada, es la primera vez que escuché tal palabra...
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...
Kasra: Son of Morphea Scleroderma Patient (Iran) Please help me. The doctor that we went to in 1990 is now dead, and the doctors in Iran do not have much information about this kind of disease...
Kathy Gaither: Mother of Juvenile Scleroderma Patient I decided that I was going to turn our negative experience with scleroderma into something positive for us and for other parents...
Katia C: Sister of a Scleroderma Patient (Italy) She is in the acute phase of the illness, and she has a hardened skin, third degree, that has affected her hands, arms, chest and legs...
(Italiano) Katia: Fenomeno di Raynaud con Sclerodermia Diffusa (Italia) In conseguenza ha una crisi renale sclerodermica che gli ha alzato la presione e gli ha provocato una ischemia...
Kim K: Mother of Morphea Patient The dermatologist said they hoped this medicine would help the morphea stop growing. So far it is still growing. I am now worried that it is starting on her forehead...
Laura C: Mother of Morphea Scleroderma Patient My 13-year-old son was diagnosed with morphea in September 2000. He is very athletic and does not seem to have any physical limitations from it...
Linda E: Mother of En Coup de Sabre and Morphea Patient Five weeks later I noticed that the bruise was still there so we went to a pediatrician who referred us to a dermatologist...
Linda G: Aunt of Scleroderma Patient I had never heard of this disease until my nephew told me my niece had it one day and I broke down and cried as she is so young...
Lisa A: Spouse of Systemic Scleroderma Patient My husband was diagnosed in July 2000. We did not expect to hear he had scleroderma, and at first neither of us understood what it was...
Lori S: Mother of Eosinophilic Fasciitis Patient On the second biopsy, they went further into the fascia and confirmed the diagnosis of eosinophilic fasciitis (EF). I would like to talk to other parents or patients with EF...
Lulu M: Grandson with Morphea Scleroderma He survived all this, only to get diagnosed with morphea scleroderma. He is on methotrexate and scarring seems to be less active, and has not gotten any bigger...
Luis: Son of Scleroderma Patient (Spain) I believe my mother's illness was caused by the depression she suffered due to the death of my thirteen-year-old brother...
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...
Mandy: Mother of Morphea Patient My daughter was in the eighth grade, busy with end of school year activities and in training with her swim team, when she noticed a hard area on the right side of her neck..
Maria D: Localized Scleroderma I do not understand whether localized scleroderma is equally as dangerous as others...
(Español/Spanish) Maria D: Esclerodermia Localizada Lo que no entiendo es si la esclerodermia localizada es igual de peligrosa que las demás...
Marion: Friend of Systemic Scleroderma Patient Bridget was diagnosed about seven years ago with systemic scleroderma with signs of stiffness in parts of her body and taut skin, mainly on her hands, arms and face...
Maritere: Mother of Daughter with Morphea It might have been just a regular bruise, but instead of swelling, the skin began to sink, perhaps just milimeters but it was sinking...
(Español/Spanish) Maritere: Madre de una niña Morfea (Mexico) Hubiera pasado por un golpe, pero en vez de inflamarse, se empezó a deprimir, quizá sólo milímetros, pero estaba hundida...
Martha: Sister of Scleroderma Patient My sister's symptoms are mainly: tiredness, and sometimes stomach problems...
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...
Melinda: Granddaughter of Systemic Scleroderma Patient My grandmother was diagnosed with systemic scleroderma approximately twenty-five years ago...
Mendyon: Mother-in-Law of CREST Patient Unfortunately, as I sit here writing this letter my husband and I are faced with some grim circumstances. She is currently losing her battle to 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 S: Daughter of Systemic Scleroderma Patient I am eighteen years old and my father has systemic scleroderma. He has had this disease for about two years now...
Michelle T: Surviving Daughter of Systemic Sclerosis Patient In memory of my mother, who was my best friend, my strength, my drive, and my compassion, I am compelled every day of my life to educate others of this disease...
Mo: Mother of Undiagnosed Girl Alexa passed the "eat the radioactive sandwich test" with flying colors...
Monica O: Daughter of Mother with CREST It is awful to see how she gets worse day by day...
(Español/Spanish) Monica O: Hija de Paciente con Esclerodermia CREST Me gustaría saber si existe algo para atenuar ese dolor y mejorar mínimamente su calidad de vida...
Morgan: Daughter of Scleroderma Patient She did not really know what it was so the doctor kind of filled her in by telling her that it was a disease that turns you into stone...
Moroni: Husband with Systemic Sclerosis My husband was diagnosed with this illness two years ago. It all began with a cardiac arrhythmia. I took him to a cardiologist who performed an echocardiogram, where he realized that his heart had some damage...
(Español/Spanish) Moroni: Esposa de Paciente con Esclerosis Sistémica Mi esposo fue diagnosticado con esta enfermedad hace dos años, se le manifestó con una arritmia cardiaca, lo llevé a un cardiólogo y éste le realizó un ecocardiograma y se dio cuenta de que su corazón presentaba una restricción...
Natasha Lubin: My Son, My Caregiver Jeffrey said to me, "I know, intellectually, that you're sick, but emotionally, my mother is never going to die and is not sick."
Nico: Daughter of Patient with Raynaud's Syndrome and Systemic Scleroderma (Italy) My mother was twenty-nine years old (now she is almost sixty one) when she discovered she was affected by Raynaud's Syndrome...
(Italiano) Nico: Sindrome di Raynaud e Sclerodermia Mia madre aveva 29 anni (ora ne ha quasi 61) quando scoprì di essere affetta dalla Sindrome di Raynaud...
Pieranna: Daughter of Mother with Sjögren's Syndrome (Italy) My mother was just recently diagnosed with Sjögren's Syndrome, after years of joint pain and dry mouth...
(Italiano) Pieranna: Sindrome di Sjogren (Italia) Ieri la mia madre é stata diagnosticata con il Sindrome di Sjögren, dopo anni di dolori alle articolazioni e secchezza orale...
Robin M: Daughter with Linear Scleroderma En Coup De Sabre While we have met with a pediatric plastic surgeon, my daughter has opted to not have any surgery at this time...
Sandy R: Spouse of CREST Patient My husband has been having all kinds of things happening to him that just did not seem right...
Santolupo: Diffuse Scleroderma (Italy) In the exams her illness appears to be halted, but about a month ago she started having stomach problems...
(Italiano) Santolupo: Sclerodermia Diffusa (Italia) Da 1 mesetto a problemi allo stomaco non ci capiamo piú niente, siamo tutti male per questa cosa, non viviamo piú tranquili...
Silvia: Mother of Son with Morphea He went to a dermatologist and got a biopsy done. His diagnosis was "Late stage of Morphea"...
(Español/Spanish) Silvia: Madre de Paciente con Morfea Fue al especialista, dermatólogo, y le hicieron una biopsia, donde le salió como diagnóstico "Cuadro Morfologico en Etapa Tardia"...
Sissy: Spouse of Progressive Systemic Scleroderma Patient His skin is hard all over, his fingers are frozen almost closed, his legs are bent at the knees and hips and he cannot finish a can of soda because his head no longer flexes enough to drain the can...
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) Pino: Sospetta Scleroderma Scrivo per mia madre. Siamo entrati da poco in questo tunnel. Tutto inizia l'anno scorso con la diagnosi della sindrome di Raynaud: mani indolensite, colore violaceo...
Shaz: Mother of Son with Morphea My seven-year-old son has had morphea since he was five years old and has just been diagnosed with localized scleroderma...
Sorin: Cousin of Undiagnosed Patient I live in Romania and I have a cousin who has symptoms that have been described as very similar to those in scleroderma...
Sue Ann: Mother of Son with Scleredema Scleredema is an illness similar to scleroderma. It is also known as Scleredema Adultorum, Scleredema Adultorum of Buschke, Scleredema Diabeticorum, and Scleredema Diabeticorum of Buschke..
Suzy H: Mother of Daughter with Morphea She is twelve now, and although it has not gotten worse, it does not seem to be getting any better...
Tammy: Mother of Son with Linear and Morphea Scleroderma Brandan has linear scleroderma on his right side and morphea on his chest pretty bad...
Toni: Spouse of Stem Cell Transplant Survivor Jeff is now 17 months past his stem cell transplant and to look at him you'd never know he was sick...
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...
Trudy Rose: Mother of Daughter who has Scleroderma I have been the caregiver for her when she needed me...
Valerie: Mother of Morphea Patient We noticed that our son was developing a purplish "rash" on his left leg when he was about four years old...
Vali: Mother of Linear Scleroderma Patient (Italy) A dermatologist diagnosed her with Linear Scleroderma, but another one said it was Linear Lichen Planus. My daughter's feet, when she walks, turn inside, and she is often warm, but doesn't have a fever...
(Italiano) Vali: Sclerodermia Lineare (Italia) Un dermatologo a diagnosticato una Sclerodermia Lineare. Un'altro invece: -Lichen Planus Lineare. Mia figlia ha i piedi che quando cammina li butta in dentro, e si sente spesso accaldata ma febbre non ne ha...
Walter: Father of Scleroderma Patient In November he received his diagnosis of scleroderma.He is the best son a father could ever hope to have...
Wendy B: Mother of Daughter with Morphea and Vitiligo Does anyone else have Morphea and vitiligo? And what is the outcome?
Wes C.: Brother of Systemic Sclerosis Patient Just days ago, my sister Michelle was diagnosed with systemic sclerosis, after being misdiagnosed for almost two years...
Yally: Dermatitis with Linear/Morphea My daughter has a spot on her left leg, that almost covers it completely...
(Español/Spanish) Yally: Dermatitis con Consistencia en Morfea/Lineal Mi temor siempre ha sido el consumir indefinidamente la droga...
See also:
Caregiver Survivor Stories: Memorials and Tributes
Scleroderma Patient and Caregiver Stories (Master Listing)

Poems for Caregivers

My Husband, My Caregiver Sylvia Finegan
My Son, My Caregiver Sylvia Finegan
My Wife, My Caregiver Sylvia Finegan
My Daughter, My Caregiver Sylvia Finegan
My Family, My Caregivers Sylvia Finegan
My Parents, My Caregivers Sylvia Finegan

Support Groups

Support Groups: Caregivers, family, friends, and survivors are all very welcome at Scleroderma support groups.
"Welcome Caregivers" Artwork
by Natasha Lubin
© 1999 Natasha Lubin All Rights Reserved
 
Go to Caregiving by Dee Dee Hunt
About the ISN

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