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SCLERO.ORG is retiring 4-24-2021. Thank you for the memories! You'll still find us in the Wayback Machine, and we'll carry your stories in our hearts forever.
Patient & Caregiver Stories Main Menu

(English) by First Name: A B C D E F G H I J K L M N O P Q R S T U V-Z

By Language: French   German   Greek   Italian   Polish   Romanian   Russian   Spanish   Turkish

By Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms

Stories in English: M

Madhu Bhatia: Morphea (Delhi, India) When will I get respite and correct diagnosis? Pain on the wound is excruciating. I am entangled in a web of doctors with no clear diagnosis…

Maggie M: Lichen Sclerosus et Atrophicus and Generalized Morphea I had to seek medical help when I realized that it was spreading and getting considerably worse…

Malen: Linear Scleroderma (Philippines) My symptoms included severe cramps in my right leg, where the pain is pushing me to my limits. My leg and arm on the right side of my body are smaller…

Mandy: Mother of Morphea Patient My daughter was in the eighth grade when she noticed a hard area on the right side of her neck..

Mani: Son of Systemic Scleroderma Patient (Hyderabad, India) My mother was always complaining of breathlessness, slight fever, and nails and fingers turning blue when exposed to cold air…

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 a simple inflammation of his hand in November of 2006…

Margot: Morphea, Linear and En Coup de Sabre I first went to a medical clinic when I noticed a small brownish mark on my stomach resulting in a doctor telling me I was wearing my jeans too tight!

Maria: Scleroderma and Raynaud's (Ukraine) I live in a small town and in a poor country. My doctors have no computers or medical magazines…

Link to Russian version of Maria's Story maria's story maria's story

Maria D: Localized Scleroderma I do not understand whether localized scleroderma is equally as dangerous as others…

Maria R: Linear Scleroderma I am as healthy as I ever was, except the line on my forehead never disappeared, but it does not bother me in any way…

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…

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…

Marian: Watermelon Stomach Now the doctors tell me I have 'watermelon stomach', a condition where the blood vessels burst and bleed and I become very anemic…

Marie: CREST About eight years ago, I noticed my fingers were going numb, turning white, while grocery shopping…

Marie B: Progressive Systemic Sclerosis I do not know how much tighter my skin can get. It is crushing the blood vessels and my arms and hands are just about frozen…

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…

Marie F: Scleroderma and Raynaud's I realized that either I get up and walk, move, quit smoking and take care of my body or suffer more…

Marilyn: Diffuse Scleroderma Being that I was a nurse you would think that I should have picked up on this myself…

Marina: Diffuse Scleroderma I was sent to a rheumatologist who spent one and a half hours checking me while explaining this rare and incurable autoimmune connective tissue disease in a nut shell…

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…

Marina F: Sjogren's Syndrome and Vitiligo (Italy) For quite a few years now I have had problems such as eczema in my ear, vitiligo, nodules in the thyroid, dry eyes with a positive Schirmer's test, and vertigo…

Marina O: Lichen Planus (Italy) I have visited at least six and each one has given me their own therapy, mostly experimental treatments and none of them really useful…

(Italiano) Marina O: Lichen Planus (Italia) Purtroppo io non ho piú fiduccia nei medici, ne ho visitato almeno 6 e ognuno mi ha datto la sua terapia…

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…

Mariposa: Progressive Systemic Sclerosis I have finger ulcers, also a second degree esophagitis, but I should say that about a year ago it started receding thanks to the doctors that follow my case…

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…

Mark: Systemic Scleroderma It wasn't until 2003 when I finally saw a doctor. They told me I had scleroderma and that I would live maybe five years…

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…

Marla: Difficult Diagnosis and Anxiety I have never been diagnosed with Raynaud's but one of my toes turns white sometimes…

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…

Martha: Sister of Scleroderma Patient My sister's symptoms are mainly: tiredness, and sometimes stomach problems…

Marthie D: CREST Scleroderma (South Africa) I live in a small town, which developed around a chemical and petrochemical industry in this area in South Africa…

Martina: Linear Morphea (Ireland) I am twenty-four years old. I was diagnosed with linear morphea in September…

Mary-Charlotte: Juvenile Linear Scleroderma I am now fourteen years old, and I have been in remission for about six years. I no longer take methotrexate or occupational therapy…

Mary L: Morphea My mom had the department of child services call on her because someone said I was all "bruised". I was denied enlistment into the United States Army because of this disease…

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 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…

Marzia: Morphea (Italy) I am a twenty-two-year-old girl. Three years ago I described my situation on this site in Italian…

Matilda: Systemic Scleroderma (South Africa) I don't think there is a lot of support in South Africa and I would actually like to start a group where people with the same disease can meet and discuss how they cope with the illness…

Maxine D: Cousin of Scleroderma Patient Thank you for the space to express my long awaited grief for my cousin Laurita…

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…

Meghann: Morphea Scleroderma I am sixteen now and have had morphea for about two to three years…

Mel: Just Diagnosed with Systemic Sclerosis I have recently been diagnosed with systemic sclerosis. This prognosis has absolutely rocked my world…

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…

Melanie W: Linear Morphea Scleroderma The only good thing about this disease is that it makes you a better person…

Melinda: Granddaughter of Systemic Scleroderma Patient My grandmother was diagnosed with systemic scleroderma about twenty-five years ago…

Melissa: CREST Plus I would love to hear from anyone who knows about CREST…

Melissa H: Hereditary Hemorrhagic Telangiectasia (HHT) I have big red marks on me which I get teased about, but not as much as I used to…

Melissa M: Morphea I've had morphea since I was about seven or eight, and I am now twenty-nine. It's over the whole front of my stomach and sides, and patches about as big as my hand on each shin and forearm…

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…

Merry: Deep Morphea They diagnosed it as localized morphea however they did not treat or elaborate…

Michael K: Interstitial Cystitis I was first diagnosed with Interstitial Cystitis (IC) when I was twenty-two years old…

Michela P: Swelling in Hands and Feet I do not feel a lot of pain, but I feel like my skin is burning on my hands…

Michele C: Surviving Daughter of CREST Patient My dad was diagnosed only four months prior to his death with CREST Syndrome…

Michelle D: Limited Scleroderma and CREST I was 16 and wanted to lose weight. I do not know if it was a reason for me getting the disease, but the doctor said it did not help…

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 (JR): Morphea Scleroderma My doctor had never seen anything like this, and prescribed some cortisone cream assuming it was a fungus and it would disappear in a week…

Michelle P: Sjögren's Syndrome I went to see Professor Hughes in London in 2010…

Michelle R: Surviving Daughter of Diffuse Scleroderma Patient I always look at those first early years of my life as my mother's last…

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…

Mick Breske: UCTD/Lupus I felt I was being treated as some dumb blond. Finally one day I was referred to a rheumatologist…

Miguel: Linear Scleroderma I am twenty-seven years old and some months ago I went to see a doctor because I had a spot on my left leg…

Mike Thomas: Diffuse Scleroderma The doctors keep passing me around saying that I am too complicated for them to treat. So nothing gets done…

Mila: Morphea Now I am twenty-five years old, and that spot has grown throughout my right leg and on one side of my belly button…

Millie: Morphea I was diagnosed with morphea scleroderma two years ago at age eleven. I want to know more people like me…

Missie R: Mixed Connective Tissue Disease I finally asked for an ANA test to check for lupus. My family doctor hesitated because my symptoms were all over the board…

Missy K: Diffuse Scleroderma (South Africa) I am on chemotherapy and often feel sick. I would like to correspond with other sufferers…

Missy M: Morphea By this time it had spread onto my shoulders, down my face, under my breasts, and down my belly. It rapidly went all around my neck, behind my ears and all the way to the tip on my chin…

Missy S: Lupus, Scleroderma, CREST and Depression They say I am not eligible for a medical card or disability. I have been fighting for four years…

Mo: Mother of Undiagnosed Girl We have an 8-year-old daughter whose symptoms have stumped our pediatrician…

Monica: MCTD This diagnosis is a bittersweet one for us. Yes, after seven years of hell, we now have a name…

Monica O: Daughter of Mother with CREST It is awful to see how she gets worse day by day…

Monika K: Morphea Scleroderma I got a bad sunburn on my back and shortly after the burn healed my mom noticed a football shaped blotch…

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…

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…

Morun: Morphea (Italy) I am a twenty-two-year-old guy, and I have had morphea for two years…

Myle: Morphea I went to a dermatologist, who at first told me it was some type of fungus and treated me accordingly. But the spot kept on growing and changing in colour and aspect…

Myrianisa: Daughter of a Severe Scleroderma Patient My mother was diagnosed with scleroderma six years ago. At the same time, she was also diagnosed with lupus, Raynaud's, MCTD, pulmonary fibrosis and fibromyalgia…

(English) by First Name: A B C D E F G H I J K L M N O P Q R S T U V-Z

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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.

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