CREST Patient and Caregiver Stories
Aileen: CREST Scleroderma Oh, the wonderful feeling to have a doctor sit there and tell you that you are not imagining things…
Alina: Scleroderma CREST Syndrome This site is very helpful as I have been reading articles of people with my condition and can relate to what they are going through…
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…
Angela O: CREST Now, the calcinosis is so bad on my fingers, that I find ordinary chores harder and harder…
(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…
Awilda: CREST and Morphea Scleroderma In 1971, I had the first symptoms of Raynaud's. I'm 53 years old and live in Puerto Rico…
Barbs: Systemic Sclerosis, CREST, Raynaud's So from the outset, diagnosis took 20 years…
(Spanish) Amelia Kreng: Esclerodermia-CREST En 1975, a mis 15 años, el Dr. Josè Luis Bena, del Hospital ´Bartolomè Churruca de Buenos Aires, Argentina, me diagnosticò Esclerodermia-CREST..
Betty Fults: CREST Scleroderma I would like to talk with someone that has feeding tubes also. Maybe that will help me…
Becky H: CREST Scleroderma I am interested in becoming a pen pal with someone so that we can be supportive to each other as changes occur and compare notes…
Betty M: CREST Syndrome I was in so much pain for so long that I tried to take my own life. This only ended me up in a mental institution where I was given shock treatments that wiped out my whole memory…
Beverly: CREST Scleroderma I was overtired and needed naps in the afternoon, pain was slowly getting the better of me and I finally went to the doctor…
Billy N: CREST/Scleroderma and Raynaud's I am a private person and prefer to keep it that way, but the public needs to know that too many 'Invisible Americans' are being treated poorly…
Birilla: CREST and Bilateral Thoracic Outlet Syndrome It all began in 1998, I was 32 years old. Two of my fingers turned white…
(Italiano) Birilla: CREST, Sindrome dello Stretto Toracico Bilaterale Tutto è cominciato nel 1998, allora avevo 32 anni. Mi sono comparse due dita bianche…
Bren: CREST Scleroderma I had three ulcers on my hands from Raynaud's. I had Botox injections for them, and by the next day they were gone…
Brenda: Limited Scleroderma, CREST, Raynaud's I was sick for five or six years, telling doctors how much pain I was in…
Carla: CREST Syndrome When I read some of these stories, they scare the devil out of me. Is this really that bad?…
Carol C: CREST Syndrome Scleroderma and Raynaud's have not robbed me of a fulfilling career. For as long as I can remember I always felt cold…
Carol F: CREST Syndrome I feel so alone right now and it would be nice to talk with someone who understands what I am going through…
Carrie: CREST Syndrome All this started in 1995, as far as receiving any diagnosis. First, I was diagnosed with breast cancer. I went through radiation and chemotherapy…
Cathy: Probable CREST Scleroderma It really starting going bad for me in November of 1999. I work on rural mail delivery and live in Quebec, Canada…
Chris Beck: In Memory of My Mother, Veta Breit Can someone help me? My hands hurt and get cramped sometimes when they get cold…
Christy: Systemic Scleroderma with CREST I have learned from personal experience that sometimes not even our closest friends want to hear about medical changes taking place within us…
Craig R: CREST Scleroderma I had my first scleroderma symptoms at age twenty-two, which included severe Raynaud's with some ulceration and tissue loss…
Christina N: CREST Scleroderma My daily life is a strain on my family, but they never complain. Not once have they moaned to me about the changes we have had to make…
Danene: Daughter of CREST Scleroderma Patient Especially knowing that your loved one may eventually die from this disease…
Danie: CREST Scleroderma My parents always thought of it as an excuse to miss school. It all started with my hands…
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…
Dawn S: CREST Syndrome The majority of doctors that I have seen have been unhelpful, unsympathetic and downright rude to me…
Debbie: CREST Here's a copy of a letter I sent to my rheumatologist…
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…
Debby: CREST Scleroderma It was then everything added up— that I did not have several different conditions, but rather they were all part of the CREST…
Deborah 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?
Dee: Daughter of Scleroderma Patient Three years ago my mother was diagnosed with scleroderma. My aunt died of scleroderma last year…
Denise: Systemic Sclerosis, CREST and Raynaud's It all started when I was 16 years old. I was having awful pains in my hands and feet…
Dianne R: Crest, Pulmonary Fibrosis Twelve years ago they told me I would never see fifty and I have beaten them by three years…
Dienne: Morphea plus possible CREST I finally saw a rheumatologist about 6 years ago, who told me I had Raynaud's and Telangiectasia (spider veins) on my hands…
Don Alfera: CREST, Pulmonary Fibrosis and Sjögren's I entitled this "My Time So Far" since this has been a journey unlike any that I could have ever tried to imagine in my life…
Doni: CREST Syndrome The doctors were always interested like, "Wow look at this," but since I had no insurance, they would not touch me…
Donna: CREST, Raynaud's, possible Fibromyalgia I was diagnosed with CREST (Limited Systemic Scleroderma) by a rheumatologist in 2006. This wasn't really a surprise to me as my mother was diagnosed with diffuse scleroderma in 1998…
Donna H: CREST, Autoimmune Hepatitis, Fibromyalgia I also have degenerative disc disease, osteoarthritis, anxiety/depression/panic disorder, irritable bowel…
Donna M: CREST Scleroderma It all started with an infection at the end of my index finger in December 1999. My finger became red, inflamed and sore to touch…
Dorne: Overlap and Possibly CREST Since 2002 I have been diagnosed with Lupus, Sjogren's Disease, B12 deficiency, mild pulmonary hypertension, Celiac disease, Type II diabetes and now the specialists are seriously talking about CREST…
Dorothy: Scleroderma CREST For this reason I convened a support group in South Africa to help encourage many others with scleroderma…
Eli: Sclerodermia and Raynaud's Syndrome (Italy) After thirteen years of suffering, he has given me a diagnosis and a cure, before it is too late, I hope…
(Italiano) Eli: Sclerodermia e Sindrome di Raynaud (Italia) Finalmente dopo 13 anni di sofferenza ho diritto anche io a una diagnosi e una cura,prima che sia troppo tardi. Spero…
Elizabeth House: CREST Syndrome I find it hard to help people to understand what it is we are going through because they can only see the outside, which looks good but it's the inside that is really falling apart.
Gayle: Deaf with Limited Systemic Scleroderma (CREST) I am looking for another deaf person, female or male, with scleroderma to talk, share, write, e-mail to communicate with…
Helen P: CREST Scleroderma I was diagnosed ten years ago when the symptoms kicked in with a vengeance following a very traumatic personal tragedy…
Iceback: CREST or Limited Scleroderma Never having heard of scleroderma, I never really asked any questions when he told me and went home to look it up on the Internet…
Irja: CREST, Limited Scleroderma I'm a 34-year-old woman from the land of Santa Claus, Finland. Ive had CREST since 1998…
Jackie: Scleroderma, CREST, and Pulmonary Hypertension We were identical twins, and she died in 1988 from kidney failure. We both started with Raynaud's…
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…
Jan: CREST Syndrome Set goals, maybe just short ones, but set them.My first goal was to be here to see my youngest son graduate from high school…
Janice E: CREST/Fibromyalgia At some point I came to the realization that what I was feeling just could not be normal. By this time my hands were swelling…
Jay: Scleroderma and CREST When I was fifteen or so, I noticed that my fingertips were starting to get very sore…
Jenny: CREST Scleroderma My symptoms started to appear over ten years ago, but I was only recently diagnosed…
Jerri: CREST Syndrome I was twenty-one years of age when I first noticed that my fingers, toes and lips were turning colors…
Jill: CREST Scleroderma and Sjögren's I could not face being in or visiting a hospital so I discharged myself from his care. I decided that I have lived with it this long so will simply get on with it again…
Johnny: CREST Scleroderma I have just won the fight to save my left foot. I spent the previous year and half fighting to save my big toe, but it had to go, because the pain was so unbearable…
Joy W: CREST Scleroderma Two months after my fortieth birthday, I was diagnosed with CREST scleroderma with Raynaud's…
Judith F: CREST Scleroderma Having all this information about my condition is helpful but also a bit daunting…
Judy King: CREST Syndrome A neurosurgeon performed a Digital Sympathectomy on my right hand and, thank God, my finger was saved…
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…
Jules: CREST She has left me with no answers or expectations and I'm afraid my obsession will only aggravate my symptoms…
Kathy Baker: CREST Scleroderma (Houston, Texas) This disease has been a roller coaster ride both emotionally and physically, but I know it could be worse…
Kathy M: CREST (Limited Systemic Scleroderma) If you do not have the right doctor, do not get furious, move on…
Kerrie: CREST Syndrome with Limited Scleroderma If I was not stressed before I went in, I certainly was then. I am going to get referred on to see someone different. Hopefully, I will be luckier second time around…
Kristen: CREST Scleroderma I thought I was going crazy. I did not know whether to cry over the diagnosis or feel relieved that I was not crazy…
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…
Laira: MCTD, Scleroderma, SLE, Lupus, CREST, Lymphoma I was just seventeen when I was told I had rheumatoid arthritis…
Laurie (Bioteach): CREST Syndrome My first symptoms of this disorder began with Raynaud's when I was in my mid twenties…
Leeben: Limited Scleroderma and CREST I won't go into how many doctors I had to visit before someone took me seriously; it was a total nightmare…
Lesley: CREST Scleroderma I started choking on food. I was told it was globus. My hands went white in the cold…
Linda F: CREST Scleroderma, Rheumatoid Arthritis, Fibromyalgia, Hashimoto's Thyroiditis, Hematoma, and Osteomyelitis I need to tell you all the gory details so you can truly understand what a miracle it is that I am alive today…
Lois: Fibromyalgia with Possible CREST When I read Carla's story it almost sounded like mine! When I was in tenth grade, Raynaud's started and a horrible kind of rash…
(Italiano) Lorenza: Sclerodermia Sistemica Variante CREST Dopo 27 anni il mio problema principale costituito dalle calcificazioni enormi, estese sul 90% del mio corpo…
Lorrie: Limited Scleroderma/CREST At first I thought, "Oh my goodness! I am going to die." But my doctor assured me that I could very likely live to be an old woman…
Lulu: Lupus and CREST Scleroderma I thought that I was getting lazy. It took all I could do to just get through the day…
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…
Marko: Raynaud's and CREST Scleroderma (Canada) It began when I started to get extremely painful fingers and feet while playing hockey so I went to see a local dermatologist…
Mariam: CREST I am feeling very low at the moment as after seven years of dealing with all the changes, and trying to carry on as normal, I feel like I have lost…
Marie: CREST About 8 years ago, I noticed my fingers were going numb, turning white, while shopping in grocery store ( freezer section) and if it was cold out..
Marina C: CREST Patient (Spain) I am a patient who was diagnosed with CREST five years ago, however I had symptoms for a long time before that…
Mars: Scleroderma with Full Gastrointestinal Involvement I finally started total parenteral nutrition (TPN, or tubal feeding) in May 2010 and it was an absolute success…
Marthie D: CREST Scleroderma I live in a small town, which developed around a chemical and petrochemical industry in this area in South Africa…
Mary T: CREST Scleroderma If my rheumatologist does not explain my problems to my satisfaction, I will be looking for another doctor…
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…
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…
Melanie V: Scleroderma and CREST I spend so much time trying to find the point of continuing to study to be a geologist when I cannot go out into the field because of the Raynaud's…
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…
Merrie: Mother of Daughter with Raynaud's and Fibromyalgia? They said it might mean something or not and referred her to a rheumatologist, but he just blew it off as nothing…
Melissa: CREST Plus I would love to hear from anyone who knows what CREST is and can offer more information, or just be able to offer support to one another…
Michele C: Surviving Daughter of CREST Patient My dad was diagnosed only four months prior to his death with CREST Syndrome…
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…
Nettie: Systemic Scleroderma with CREST Up until now I have done very well at pretending not to be ill…
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…
Pat: CREST Scleroderma They had to do surgery and take calcium deposits out of my knee. In May of 1998 they did surgery on my left elbow…
Peggy: CREST and Raynaud's Years later, at fifty-six, my family doc said he thought I had scleroderma because I was having trouble with my hands, and my fingers looked like sausages…
Penelope: CREST Scleroderma (Italy) I was tired, my joints ached, and my hands turned different colors…
(Italiano) Penelope: Sclerodermia CREST (Italia) Stanchezza,dolori alle articolazioni e variazioni di colore alle mani…
Rebecca: CREST, Fibromyalgia, Sjogren's and Pulmonary Hypertension My finger has gangrene and the hand specialist says it needs to look like a mushroom before they will amputate…
Renae B: CREST, Sjögren's, Raynaud's I was diagnosed with scleroderma about four years ago at the University of Iowa Hospitals in Iowa City, Iowa…
René: CREST/Raynaud's I went through what is known as a hyperbaric chamber. This actually pushes your blood through your veins and helps the circulation…
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…
Robin T: CREST Syndrome My hands were always cold and turning white, purple then red then back to normal, and hurting. Then I developed a sore on my finger tip that wouldn't go away…
Rose M: CREST Syndrome I was finally correctly diagnosed with CREST after two years of thinking I was going crazy…
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…
(Turkish) Ruko: Sistemik Skleroz Mart itibari ile sistemik skeleroz tanisi ile Cerrahpasa Tip Fakultesi Romotoloji servisinden taburcu oldum…
Sandie: CREST with Raynaud's I consider myself very lucky to have received my CREST diagnosis at an early stage. I had Raynaud's for a few years but no diagnosis of CREST…
Sandy A: CREST Syndrome I have had surgery to remove the calcinosis on my knee and forearm twice, and once on my elbow. Yet it always comes back…
Sandy J: CREST Scleroderma I have had an ileostomy for two years and a feeding peg for just over one year, and would appreciate comments from any person who also has one or both of these problems…
Sandy R: Spouse of CREST Patient My husband has been having all kinds of things happening to him that just did not seem right…
Sara P: CREST Syndrome In the winter of 1997, my fingers and toes started turning white and numb in response to the cold weather…
Sarah B: CREST Scleroderma I lost the tips of my baby finger and thumb. The other three fingers do not look too pretty, either…
SariHope: CREST Scleroderma and Sjogren's Syndrome During the first few years after being diagnosed with Raynaud's, I had to go to the grocery store with gloves on to reach into the frozen freezer…
Scott: Friend of Patient with CREST One of her first doctors said she had five years to live. Why would he say such a thing? I have read story after story of people having CREST for decades…
Sharon: CREST with Limited Scleroderma and Sjögren's (Australia) Day by day I discover another food I cannot eat, as I get heartburn (Esophageal Dysfunction) and my mouth and my tongue burn. I cannot eat any fruit or fruit juices…
ShaunTel: Scleroderma/CREST Since 1993, I have had doctors telling me so many different diagnoses that I believed I was really just making it up…
Sheila: CREST with Limited Scleroderma I felt really scared, confused, and dehumanized in the process of my diagnosis and further dealings with the "western medical field"..
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…
Soledad: Diffuse Scleroderma with CREST I have tried to find different therapies and sometimes I feel fine, but then I have a crisis, I fall, pick myself up again, time and time again…
(Español/Spanish) Soledad: Paciente con Esclerodermia Difusa con CREST He tratado de buscar diferentes terapias y estoy bien por un tiempo pero vienen las crisis y caigo, y vuelvo a levantarme, una y otra vez…
Stephanie D: Scleroderma/Heparin-Induced Thrombocytopenia If I receive heparin again I will certainly die…
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.
Susie: CREST Syndrome I have had CREST syndrome for the past eight years. My specialist is Dr. Frederick Wigley, from Johns Hopkins…
Syl: Systemic Scleroderma/CREST/Pulmonary Hypertension/Sjögren's The physician's assistant noticed that my hands went really blue…
Terry: CREST I was told that I have CREST by a doctor who saw me in a Workman's Compensation case…
Terri Jo: CREST I am also a Registered Nurse and know all too well how much one's mind can affect healing and wellness but I find myself stressed more than usual about this thing…
Theresa C: CREST/Limited Scleroderma I am fifty years old and I was diagnosed with CREST in September of 1996…
Tracie S: CREST with Fibromyalgia I ache from head to toe, am cold all the time, feel like I am in a fog, in general I am just not up to par…
Tyler: Scleroderma, CREST Syndrome It is really confusing and the doctors say it is very rare for people my age to have it…
Weesie: Crest/Raynaud's I have come to feel that I am am easy pickings for the majority of physicians since they know that there is no cure…
Wendy L: CREST Syndrome In 1987 I was diagnosed with Non-Hodgkin's Lymphoma. I received highly toxic chemotherapy, and at a later date radiotherapy…
Yvonne Frasure: CREST and Fibromyalgia I no longer go to the doctor because I simply cannot afford it. I cannot get insurance so everything is out of pocket…
Yuri: CREST Syndrome Now, one month before my nineteenth birthday, I live with CREST Syndrome, rheumatoid arthritis, acid reflux and anemia…
SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.