#MyStills Global Campaign: Learning from Our Journey

Todas las artritis autoinmunes y autoinflamatorias son heterogéneas por naturaleza; esto significa que, si bien ciertos síntomas y características clínicas pueden ser comunes, la presentación y la progresión de cada persona son únicas. En enfermedades raras, como la enfermedad de Still, esto complica las cosas para los pacientes, a quienes les resulta difícil explicar su condición a familiares, amigos y profesionales médicos (ya que la mayoría nunca ha tratado a un paciente con esta enfermedad).


Al recopilar estas historias, esperamos generar mayor conciencia y educación sobre la enfermedad de Still para los pacientes, sus redes de apoyo, el público en general y la comunidad médica.


VIEW STORIES

*Diversity clause: We understand Still's Disease affects all races, genders, and cultures. All stories that were submitted to our organization are published on this page. Patient selection for the video was limited to 5 spaces (budgetary purposes), representation of the diversity of the disease spectrum - SJIA through AOSD, and a need to enlist primarily European participants because the sponsor is located in Europe. All stories we received were used in the videos or are located below; we are unable to control cultural and gender diversity in these story publications.

Stories - Video Campaign

WATCH ALL VIDEOS

Vean los videos individualmente y consulten las historias enviadas al sitio web a continuación.

Amanda, United Kingdom

Diagnosed with Systemic Juvenile Idiopathic Arthritis (SJIA) at age 5, but struggled to keep this diagnosis until re-diagnosed as an adult at age 41


Video Focus: My Positive Mindset - Creating a lifestyle that is accepting of what I can still do

“I think it’s important that people can stay positive, because it can really affect you when you’re feeling down.”

Amanda has shown how resilient she’s been throughout her experience with Still’s disease since her original diagnosis when she was five years old.  Learn how she’s adapted her life to focus on the things she can do and how her positive mindset has helped her through her journey.

Catherine, Ireland

Adult-Onset Still's Disease (AOSD)


Video Focus: Confronting My Disease - Developing a support network and overcoming loneliness

“I found out that the doctor I was seeing hasn’t actually treated anybody else with Still’s before. So, I didn’t really feel like anyone really understood.”

Having a rare disease can make you feel lonely. Catherine, from Ireland, explains how she just wanted to reach out to somebody that understood how she felt.  She describes how she confronted her disease by accepting her diagnosis, and by listening to her body she has learned how to live with her Still’s disease rather than to battle with it. 

Natalie, Australia

Parent of child with Systemic Juvenile Idiopathic Arthritis (SJIA)


Video Focus: It's a Family Disease - Becoming an advocate for your child as a family living with Still's Disease

“I didn’t want to be speaking for her because I can’t feel what she feels. I can see what she’s feeling, but I can’t feel what she’s feeling.”

Natalie, a parent of a child with Still’s disease, shares her family's experiences confronting this disease together. She describes the challenges associated with diagnosis and the frustrations experienced from a parent's point of view.

Adele, United Kingdom

Adult-Onset Still's Disease, initial flare during the time of her wedding


Video Focus: The New Normal

"I was bent over double and my dad said I shuffled like an old lady. I couldn’t get any footwear onto my feet since they were so swollen. I booked an appointment to see my local doctor and I was in tears climbing the stairs to his room. He met me at the top and my Mom, who had come with me, said 'Doctor, please we need to help her, she’s in agony. She has her wedding tomorrow."

Adele, from the UK, explains how she embraced and accepted her ‘New Normal’ after being diagnosed with Still’s disease. Adele experienced her first flare, which included high fevers, around her wedding day. She describes her journey to a diagnosis where her symptoms were often misunderstood with that of Rheumatoid Arthritis. Watch her story to hear how her condition has not stopped her from doing the things she enjoys, and how she’s accepted her ‘New Normal’. 

Stories - Website Campaign

Thank you to all the persons affected by Still's Disease who have submitted their #MyStills stories. While our spaces for video production were limited, the remaining entries are included here on this web page. If you are interested in adding YOUR #MyStills story, please contact us by completing a request for more information.

Aukje (AOSD, Netherlands)

"I got a fever and a rash all over my body, and all my joints had become painful. At first I thought I had become ill as a result of having been extremely busy, but my GP was worried and didn't understand what was wrong with me."
Lee el resto de la historia de Aukje.

Claire (AOSD, Ireland)

"My symptoms were high-fevers and shivering, rash, pain in wrists, pneumonia in both lungs and sore throat. I was very unwell and it look the doctors a number of weeks to diagnose me."
Read the rest of Claire's story

Tammy (Hijo diagnosticado con AOSD, Estados Unidos)

"The doctors had no clue of what they were dealing with. My son was sick less than 30 days. [...] He never had any health issues and no indicators of an illness that would take his life at the age of 20. Had the doctors known about Stills and how to treat it, my son may still be with us."
Read the rest of Tammy's story

Lisa (AOSD, United States)

"After a week of hives, I started with rashes on my chest, then arms, and finally legs. They were red- patchy like rashes. Then my eyes started watering severely, I had to carry a box of tissue around with me. After going to class with no makeup on and hives from hell, I woke up one morning and my legs were in severe pain and I couldn't stand on them.
Read the rest of Lisa's story

Lana (AOSD, Canada)

"At the time I started to feel the aches I was 47 years old and in good health. I was waking up with a painful back and my knees hurting. I would have to take Advil and other over the counter drugs to help me cope with the pain." 
Read the rest of Lana's story

Ana (AOSD, Estados Unidos)

"Once I met my rheumatologist, we did test after test. It took many months and my husband doing research since she had no idea what was wrong with me. Finally, my husband asked about Adult Stills. They tested for it, and that was when I was finally informed that I had Adult Onset Stills Disease." 
Read the rest of Ana's story

Kari (AOSD, United States)

"I demanded they bring in a rheumatologist. He took one look at me and my labs and said 'I haven't seen this outside of med school but I think you have Still's Disease'."
Read the rest of Kari's story

Karen (AOSD, United States)

"I was immobile. I could barely walk, swallow, and had intense fatigue. [...] I could not even open a phone book to look up doctors or hold the phone to dial." 
Read the rest of Karen's story

Eleanor (AOSD, UK)

"Durante ese período, no podía levantarme de una silla, del inodoro ni de la bañera. A día de hoy, todavía tengo que salir de la bañera de una manera específica debido a las lesiones que sufrí en las muñecas."
Read the rest of Eleanor's story

Kelly (sJIA, Canada)

"SJIA has affected my life every single day. It caused me to develop severe allergies, asthma, idiopathic seizures, liver problems, inflammation of organs, inflammation of all my major joints, and inflammation of the connecting tissues to my muscles."
Lee el resto de la historia de Kelly.

Staci (AOSD, United States)

"I was convinced that I had the flu, but little did I know that my life was about to change forever."
Read the rest of Staci's story

Hannah (AOSD)

"Before I was diagnosed, I felt very frustrated because I knew the diagnosis of Rheumatoid Arthritis wasn’t the correct one because of the symptoms that I had. I figured that I wasn't going to have a diagnosis that made sense for a long time or ever. But after I was diagnosed, I was so relieved because this diagnosis made so much more sense."
Read the rest of Hannah's story

Lisa (AOSD, United States)

"Llevaba diez meses con fiebre diaria y fatiga intensa. Consulté con tres reumatólogos, dos infectólogos y un hematólogo en el centro oncológico antes de recibir el diagnóstico definitivo del reumatólogo."
Read the rest of Lisa's story

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PATIENT-REPORTED STILL'S DISEASE BROCHURES

EDUCATION MATERIALS


* Estas actividades del Día de Concienciación sobre la Enfermedad de Still y los folletos sobre la enfermedad reportada por los pacientes fueron posibles gracias a una subvención proporcionada por Swedish Orphan Biovitrum AB (Sobi).