Scleroderma Types Juvenile

Juvenile Scleroderma Patient and Caregiver Stories

Morphea Stories

Linear Stories

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…

Angela R: Linear Morphea Scleroderma I am twenty-five now and only have the two spots that I deal with pretty easily. I just hope it doesn't get worse…

Anita G: Localized Scleroderma This also started as a small spot that I thought was insignificant, but as time went on, it grew, along with my symptoms…

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

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…

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

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…

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…

Emma C: Living with Localized Morphea Some of my earliest childhood memories are of my mother taking me to see doctors who were baffled by the strange marks on my 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…

Emy: Localized Scleroderma I thought I was going bald, so I decided not to push it further, nor ask my parents…

(Español/Spanish) Emy: Esclerodermia Localizada Pensé que tenía alopecia por lo que decidí no indagar más ni comentarle a mis padres…

Federica: Morphea I have had localized morphea in my lower back for two years…

Georgina: Mother of Child with Morphea The only thing I know about it is what her doctor told me, namely that it has no cure…

Georgina: Madre de Paciente con Morfea Lo único que sé es que es una enfermedad incurable, por que es lo único que me explico su doctor…

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

Hazel: Morphea Scleroderma In 1962 when I was just twelve years old, my mother took me to our family doctor with what looked like a blister under my right eye…

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…

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…

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…

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…

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…

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 H: Mother of Son with Linear Morphea What started as a bruise in his forehead, has come down to his nose, and his forehead has sunk a bit…

(Español/Spanish) Laura H.: Morfea Lineal Al principio no le dí mucha importancia porque pasaba el tiempo y seguía igual, pero ahora pasado un año todo ha cambiado…

Lida: Morphea Scleroderma (Colombia) When I became a patient, doctors looked at me like a weird case, and they did not allow my father to be present during the biopsy. While my parents could they took me to dermatologists, witch doctors and miraculous priests…

(Español/Spanish) Lida: Morfea (Colombiana) Además, cuando ingresé los médicos me miraban como "bicho raro" y no dejaron ingresar a mi padre al stand ni a la toma de la biopsia. En fin, mientras mis padres pudieron me llevaron a control con el dermatólogo, con hierberos, sacerdotes que hacían milagros…

Lindsey Z: Morphea Scleroderma I was self conscious in fear that others would care, or find me ugly because of it…

Lucy's Mum: Mother of a Linear Scleroderma Patient I googled 'my daughter has thinning hard skin' and this sclero.org web site came up…

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…

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…

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…

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…

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…

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…

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…

(Español/Spanish) Mila: Morfea Hoy en día tengo 25 años y esa mancha está en toda mi pierna derecha y al lado de mi ombligo…

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…

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

Sandra C: Morphea A few months ago I began a special treatment with UVA 1 photo therapy and my condition has improved considerably…

(Español/Spanish) Sandra C: Morfea Desde hace algunos meses empecé un tratamiento especial con fototerapia uva 1, y he tenido gran mejoría…

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…

Skye: Localized Juvenile Scleroderma After weeks of complaining to my parents that my foot looked larger and was discolored my mom noticed it being bigger and discolored so she called my dad at work and told him…

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…

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

Tyler: Scleroderma, CREST Syndrome It is really confusing and the doctors say it is very rare for people my age to have it…

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…

Vivi: Facial Scleroderma (Linear/Morphea or Parry Romberg's) I feel really bad, I want to get better, I want to be pretty, I am hurt when I see my cousins healthy and pretty and I can't stop covering my face because I am ashamed…

(Español/Spanish) Vivi: Esclerodermia Facial (Lineal/Morfea, Parry Rombergs) Me siento mal, quiero curarme, quiero ser bonita, me duele ver a mis primas bien y bonitas y yo no puedo descubrirme la cara porque me da pena…

Yally: Dermatitis with Linear/Morphea My daughter has a spot on her left leg, that almost covers it completely…

Patient & Caregiver Stories (Main Collection) ISN.

TOLL FREE HOTLINE, U.S. and Canada: 1-800-564-7099
Ask for our Free Info Packet by email or postal mail!

SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to:

The most important thing in the world to know about scleroderma is sclero.org!