Bringing HS (Hidradenitis Suppurativa) Out Of The Dark | Jackson Gillies | TEDxSantaBarbara

Posted on by TEDxSantaBarbara

Have you ever woken up one morning to discover an abscess that would grow to the size of a baseball in your armpit? I have. I have HS or Hidradenitis Suppurativa, and so does up to 4% of the population. That’s 230 million people, and yet no one is talking about it. Well, I will. Jackson Gillies, an 18-year-old student at SBCC. His life took a significant turn when he won Santa Barbara’s Teen Star USA crown in 2016. He has performed at the Concert to End Gun Violence Across America with Kenny Loggins and opened for Jim Messina.

Four years ago Jackson developed the first sign of another disease. After a few misdiagnoses, his condition was pegged as Hidradenitis Suppurativa, an autoinflammatory disease that causes painful skin abscesses. HS afflicts as many as 4% of the population (potentially 30 million people), yet is rarely discussed or studied. HS can be physically, psychologically, and socially debilitating, the lesions affecting the most sensitive parts of the body, places where there is skin to skin contact.

Despite all this, and after five surgeries, Jackson conceived, produced, and starred in the “Something That Matters Concert” to raise awareness about Hidradenitis Suppurativa. He was the first [...] continue the story

Tagged Under: , , ,

Stag Beetle

Posted on by Perspectives – Art, Inflammation and Me

By Ptolemy Elrington

COUNTRY: United Kingdom

DISEASE: Psoriasis

FORMAT: Mixed Media Sculpture

ARTIST’S SUMMARY

This beetle is heading somewhere. It has purpose and strength and is preparing to fly. We often feel small under the eyes of others, and with a visible and constantly uncomfortable affliction this can cause us to feel reduced to the status of an insect. But everything has a place, and therefore everybody has validity which we must strive to recognize, and must strive to apply to how we view ourselves and others. This patient’s moment of meaning centers on hope, progression and potential.

PATIENT’S PERSPECTIVE

“For over 17 years Psoriasis had become the essence of me, dominating family life. I was isolated, fearful and self-loathing, overwhelmed by long periods of hospitalization and endless clinical appointments. Although my Psoriasis is not cured, since 2005 it has become manageable. Psoriasis reminds me of its presence at the least convenient times. It no longer holds me back but propels me on to make my voice heard in improving the services available to other sufferers.”

About Perspectives

‘Perspectives – Art, Inflammation and Me’ is an initiative that brings together more than 200 artists with patients in more than 40 countries. Together, they have created a series of paintings, [...] continue the story

Tagged Under: , , , , ,

Wild Cards

Posted on by Perspectives – Art, Inflammation and Me

By Fong Ku

Medium used: Silkscreen print Artist Biography Fong Ku is in her second year of a Bachelor of Fine Arts degree at the Alberta College of Art and Design. With a previous degree in international development she is drawn to printmaking’s historical role in social and political movements, its emphasis on process and the inter-disciplinary combination of drawing, painting, and in the case of plate preparation, sculpture. Creating a successful print requires the artist to constantly investigate both sides and many layers of an idea, resulting in a varied and meditative practice of intentional mark making in one direction to expose the reflection of the artist’s vision. Using the artist’s words, summarize the artwork and how they feel it reflects the patient’s moment of meaning Printmaking’s capacity for producing multiples complements education and awareness initiatives. This silkscreen print, the third in an edition of three, affirms the spirit of cross-sector collaboration, and reminds us of our interconnectedness. Deb, an avid runner, introduced her health condition as the cards she was dealt. Despite severe hip joint degeneration, she insisted on being carried to her treadmill instead of the wheelchair. Card playing’s mix of fate, chance and risk has a long history. This artwork conveys [...] continue the story

Tagged Under: , , , , ,

Define

Posted on by Perspectives – Art, Inflammation and Me

By Terese Mullin

Medium used: Acrylic on canvas

Artist Biography

Terese Mullin is in her second year of study at the Alberta College of Art and Design (ACAD) after having worked as an artist for ten years. She was awarded an entrance scholarship from ACAD, as well as receiving an award for earning a high GPA in her first year. Terese’s strongest artistic interest is in painting, with recent work exploring the human figure and nature, often combining and intertwining the two. She enjoys abstracting what is seen in the physical world, as well as creating non-representational work.

Using the artist’s words, summarize the artwork and how they feel it reflects the patient’s moment of meaning

In speaking with Deborah, who suffers from two immune-mediated inflammatory diseases (IMIDs), I learned that one of the worst aspects of having these diseases was loss of mobility. Deborah was a runner before the diagnosis, and could not fathom losing that integral part of her life. Adamant that she was going to “define” her diseases, instead of letting the diseases define her, she forced herself out of her wheelchair and relearned how to run, adapting her stride, speed and type of run. Deborah has a strong spirit and is [...] continue the story

Tagged Under: , , , , , ,

Fusion

Posted on by Perspectives – Art, Inflammation and Me

By Pili Farrulla

COUNTRY: Puerto Rico

DISEASE: Crohn’s Disease, Psoriasis & Rheumatoid Arthritis

FORMAT: Painting

ARTIST’S SUMMARY

The painting is triptych or three paintings in one. The first painting shows the battle with joint pain that Rheumatoid Arthritis patients face. The second painting depicts Crohn’s Disease and Psoriasis – conditions that need heart and courage to fight. The third painting represents all three conditions. The transparent or gray person represents the emptiness and confusion felt when a patient is diagnosed. The middle person shows how as years pass, patients improve physically and mentally. All have heads held high, signalling their determination in overcoming obstacles.

The full-colored person shows an empowered and healthier patient. The three stripes represent each disease. Throughout the paintings, the color gray depicts the pain and emptiness in their lives.

PATIENT’S PERSPECTIVE

Patient with Rheumatoid Arthritis: “At the moment of my diagnosis I felt like an outcast. I’m a true warrior who has been fighting an uphill battle that most of you can’t imagine. Now I feel very positive and I see the light at every step of my disease.”

Patient with Crohn’s Disease: “During this long journey of my disease I have found that my family’s and my physician’s amazing support has made it possible [...] continue the story

Tagged Under: , , , , , ,