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Linear Scleroderma Patient and Caregiver Stories

AJ Miller: Linear Scleroderma I have had Linear Scleroderma since 1968, when I was 7 years old. I have never met anyone else with it…

Alicia: Linear Scleroderma My doctor said the people who are looking at me and seeing the scars are the ones who need healing, and that I should pray for them…

Alicia B: Localized Morphea with possible Parry Romberg Syndrome The doctor kept saying something had eaten away at all the fatty tissue and the muscles which left it just skin, blood, bone, and nerve so when you look at it, it looks like I have dirt on my face and a gaping hole to go with it…

Angel: Linear Scleroderma I have linear scleroderma. I have had it for a little over five years and I am only twelve…

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…

Anna: Linear Scleroderma (Poland) I realized that it is not worthwhile to give up, even during the most difficult moments; it is necessary to fight and to believe that it will be better. If I had not believed I would not have been alive now…

Ariel: Linear Morphea Luckily, it only affects my skin, so I can still dance and play the piano…

Ariel M-S: Linear Morphea Within six months, the morphea had eaten away almost all of the fat on my arm and I have developed nerve and muscle pains that do not go away…

Ashlin: Localized Scleroderma It took me five months to realize that I needed to go to the doctor, and now I feel that I should not have waited so long…

Aurora: Linear Scleroderma I am always very tired, and I suffer from pain that will not go away no matter what I do…

(Español/Spanish) Aurora: Esclerodermia Lineal Estoy agotada continuamente, y padezco dolores que no se quita con nada…

Carolina: Linear Scleroderma As time went by it disseminated throughout my leg and reached my foot…

(Español/Spanish) Carolina: Esclerodermia Lineal Luego de multiples examenes, de reiteradas visitas a diferentes dermatólogos e inmunólogos diagnosticaron una escleroderma localizada de tipo lineal…

Catherine: Mother of Linear Scleroderma Patient Emma's linear scleroderma started on her left cheek at the age of 4 years and by the time she was eight that side of her face was quite deformed…

Charmaine C: Lichen Sclerosus and Scleroderma Soon multiple spots developed across my abdomen, with a few stray ones on my forearms and more on the left leg…

Chris S: Mother of Linear Morphea Patient Whatever it was, I knew it should not be there…

Christin: Linear Scleroderma My name is Christin. I am a twenty-year-old college student. I have had scleroderma for as long as I can remember…

Davie's Mom: Mother of Linear Scleroderma Patient Davie could be a candidate for skin grafts. If anyone has tried this I would love some input…

Dawn M: Linear/Systemic Scleroderma My family and I were informed by the doctors, that the localized/linear form of scleroderma that I was diagnosed with, would never progress into the potentially fatal, systemic form…

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 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…

Deedra: Linear Scleroderma In the course of two years the scleroderma spread from under my knee to the top of my thigh…

Desiraye: Linear Morphea When I was 14 years old, I spent the whole summer laying out in the sun. I developed a white patch that my mother thought was ringworm…

(Polski) Dorota: Twardzina linijna (coup de sabre) Moja historia z twardzina zaczela sie 15 lat temu i do dzisiaj (kiedy trafilam na strony serwisu o sklerodermii) nie zdawalam sobie sprawy z tego, jak powazna…

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…

Edna S: Linear Scleroderma I am desperate because I know this is a deteriorating illness…

Elizabeth O: Linear Scleroderma I am afraid also because it goes through my left eye, which I see becoming smaller…

(Español/Spanish) Elizabeth O: Esclerodermia Lineal Me da temor porque pasa por mi ojo izquierdo, que cada día noto más pequeño…

Ely E: Linear Scleroderma (Italy) She took me to the dermatologist who discovered another spot that ran through my left leg from the stomach towards the back…

Emmi: Linear Scleroderma and Vitiligo My parents thought I was going to die, and doctors here in Finland did not really know what to do with me. There are not many scleroderma cases in Finland…

(Español/Spanish) Edna S: Esclerodermia Lineal Estoy desesperada por que sé que esto es una enfermedad deteriorante…

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…

(Italiano) Eugenio: Sclerodermia Lineare lPremetto che mi rendo conto della difficoltà di rispondere ad una mail senza poter vedere il paziente ma, come padre, ho sentito il bisogno di scriverLe per sapere la Sua opinione…

Gina: Morphea or Linear Scleroderma I really try to put it out of my mind and be thankful that it is not systemic. But, every time I notice new areas turning color it really worries me…

Ginger: Generalized/Linear Scleroderma After analyzing all the test results and my medical records the neurologist attributed the muscle atrophy to the linear scleroderma…

Hamza: Linear Scleroderma I would really like to know whether there are any athletes who overcame severe linear scleroderma in their leg…

Heather: Vitiligo, Hypothyroidism, and now Linear Morphea I am not too concerned about the other two conditions since there really is nothing you can do about the vitiligo, and the thyroid is under control. The morphea is what is bugging me…

Hope: Linear Morphea My mom took me to the doctor and for three months he treated it as ringworm…

Ila: Localized Scleroderma En Coup de Sabre (Italy) It seems as if the illness has stopped, or to put it in a different way "calcified", like they told me in my last doctor's appointment…

(Italiano) Ila: Sclerodermia Localizzata a Colpo di Sciabola (Italia) Sembra che la mia malattia si sia fermata, o meglio "calcificata" come mi è stato riferito all'ultimo controllo…

Jan L: Linear Scleroderma and Vitiligo I was not ever overly concerned with my looks, so I really did not pay that much attention to it…

Jason: Linear Scleroderma I have recently been diagnosed with Raynaud's as well, have had gastro-intestinal difficulties more common to systemic forms, and have witnessed these lesions grow and deepen rather than decrease in size…

Jennifer M: Mom of Linear Morphea Patient Almost the minute that the doctor walked into the room she knew what it was. The first words out of her mouth were, "That's linear morphea"…

Jess: Linear Scleroderma (Cairo, Egypt) It's been twenty years of a battle with the unknown. I am twenty-six and I have linear scleroderma, and I have been reminded of it every single day for twenty years…

(Español/Spanish) Jessica: Madre de Paciente con Esclerodermia Localizada en Golpe de Sable Tengo una niña de 6 años de edad, le diagnosticaron Esclerodermia Lineal en golpe de sable desde los 3 años…

Jessica G: Parry Romberg Syndrome By the time I was about five years old, the disease had already disfigured my left side drastically. I have had over fifty operations and surgical procedures for Romberg's…

Jessica M.: Mother of Linear Morphea Patient About eight months ago my daughter developed a dark circle on her leg. It looked like a deep bruise, but we let it go. It never went away…

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)…

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…

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…

Kay: Linear Morphea Scleroderma I saw a dermatologist at Mayo Clinic who included me in Grand Rounds where every dermatologist at the clinic got to see my patches…

Kelly H: Linear Scleroderma I have linear scleroderma. It took years to diagnose, when I was around six years old; now I'm in my thirties…

(Dutch) Leon: Lineair Bij mij ontdekte men op 5 jarige leeftijd twee vlekjes op mijn linker onderarm…

Lancia: A Friend of a Morphea Patient (Italy) Some time ago a beloved friend of mine was diagnosed with scleroderma…

Lisa Kate McGowan: Linear Scleroderma When I was eighteen years old, I was diagnosed with linear scleroderma. It changed my life because it affected my left arm by leaving a big shiny scar…

Louise: Linear Scleroderma I got a bit of a fright when I read about scleroderma affecting the organs…

(Italiano) Lucia: Sclerodermias a Colpo di Sciabola La lesione c depressa, larga circa un centimetro,di coloro scuro, localizzata in posizone centrale sulla fronte…

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…

Mary B: Scleroderma En Coup de Sabre I feel like it is tearing my head open. Sometimes I get headaches, and I believe it is because of this illness…

(Español/Spanish) Mary B: Esclerodermia en Golpe de Sabre Por el contrario siento que se me está haciendo una enorme brecha en la cabeza. A veces me dan dolores de cabeza y creo que es por causa de esta enfermedad…

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…

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…

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

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…

(Español) Miguel: Esclerodermia Lineal Hace unos meses fui a ver a un médico porque tenía una mancha en mi pierna derecha, no me molestaba pero mi piel comenzaba a endurecerse en esa área…

Nikhath: Linear Scleroderma (India) I hide my hands from everyone and because of this behavior of mine, people assume that I am shy…

(Italiano) Paola - Sclerodermia Lineare 3 anni fa ho visto sotto il malleolo del piede destro di mio figlio Giacomo, che allora aveva 8 anni, una macchia color…

Patty S.:Localized Scleroderma, Pulmonary Hypertension and Sjögren's I have quit my job and reduced my stress a hundred percent. I am doting on my children and my husband…

Rhea: Morphea The giant spot on my back started out as Morphea and then started gaining more qualities of Linear Scleroderma…

Rodriguez: Linear Scleroderma Little by little pigmentation is coming back into my leg and there are times I still feel joint pain but I have gotten through it…

Rubie: Linear Morphea Scleroderma I was referred to a dermatologist and was finally diagnosed with linear morphea at the age of four…

Sarah H: Linear Scleroderma When I was very young, two or three years old, my mom started to notice that the top of my scalp was changing…

Stacie: Linear Scleroderma I may have been incurable at four years old but it gave me an insight. I appreciate my life so much more than I would have thought. It could be worse…

Tami: Morphea Scleroderma I have gotten used to the stares everyone casts my way because in their eyes I am different. Unique, I guess…

Tammy: Mother of Son with Linear and Morphea Scleroderma Brandan has linear scleroderma on his right side and morphea on his chest pretty bad…

Tammy M: Linear Scleroderma and Vitiligo When I was first diagnosed there was no such thing as the Internet. I always felt that my family and I were the only ones in the world who knew what scleroderma was…

Teena: En Coup De Sabre My mother and I went to Johns Hopkins Hospital. They did what was called 'Grand Rounds' where about fifty doctors were looking at me taking pictures and videotaping me…

Terry E. (Mojoy the Clown): Morphea Profunda Linear Scleroderma My right lower leg started to swell and the ankle grew big. It hurt all the time…

(Italiano) Tommaso DM: Lineare Ho quasi 13 anni. Sedici mesi fa mi è stata diagnosticata la sclerodermia…

Tore: Linear Scleroderma However, as time went by, the patch extended, and the hardening, instead of going down, got worse, involving more and more parts of my leg, all the way to my knee…

(Italiano) Tore: Lineare La cute ma anche i tessuti sottocutanei risultavano induriti. In realtà sembrava che la pelle si fosse completamente attaccata all'osso, dal quale era impossibile smuoverla…

Tori: Localized Juvenile Scleroderma This is not the first rare disease that I have had…

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…

Vanessa: Linear Scleroderma My older sister found a way to cover up the nasty disease on my forehead. Bangs! It was a great idea…

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…

Also See

Causes of Scleroderma. ISN.

En Coup de Sabre. Includes patient stories. ISN.

Juvenile Scleroderma. ISN.

Parry Rombergs Syndrome. Includes patient stories. ISN.

Scleroderma Photos. Pictures of scleroderma symptoms, including photos of Linear Scleroderma.

Go to Mike Thomas: Diffuse Scleroderma
 
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