Citation: “Parnell, Michaela. Varied resources from the Millions Hiding HS exhibit and display as part of the Community Science Showcase during GameLab. This event was part of Manchester Science Festival 2018, hosted at the University of Salford Library, MediaCityUK campus. (Vol. 1.5. A community remembered. Rob Howes. Melbourne, Australia. Oct 26 2018.)”
https://doi.org/10.17866/rd.salford.7346894
(‘Please note, the zipped resource pack contains multilingual versions of the resources in: English, Spanish, Italian, Danish, French, Dutch, Swedish, German and Croatian. The English language versions are provided as previews.’)
See also:
Ochu, Erinma; Parnell, Michaela; Hardeman, Megan (2019). Educating the next generation of researchers on open and collaborative data sharing. figshare. Journal contribution.
“Watching a film called Patch Adams inspired me to do a biology degree to learn to understand HS in a scientific way to help others.” 2018 Michaela A. Parnell, UK.
A COMMUNITY REMEMEBERED
“A 36 year old African American woman living in Portland, Oregon, a woman named Stesia first developed HIDE in 1986. Courageous, feisty & determined, Stesia reached out past the stigma and fear and founded a world-wide community.”
On June 17, 1997, H.I.D.E. CANADA (Hidradenitis Information Development and Exchange of Canada) was established as a volunteer Internet resource group established in 1997 by Canadian sufferers of Hidradenitis Suppurativa, co-founded by Canadian’s Michael Bonnar & Sylvia Shawcross. HIDE developed a website and an internet support group for Hidradenitis sufferers in Canada and abroad with the following mission statement: ‘To develop, promote and facilitate the exchange of disease information for sufferers, medical professionals and the public. To provide a forum for sufferers to openly communicate and support each other. To advocate and encourage the advancement of disease research and treatments to find a cure for Hidradenitis Suppurativa.’
By 2000, HIDE had supported members from 14 countries and developed ‘The H.I.D.E. International Network’ with at least four prominent and active affiliates ( HIDE France, HIDE Netherlands, HIDE UK & Ireland & HIDE America).
In 2001 this global HS Community known as HIDE developed a nonprofit organisation for members, by members: the Hidradenitis Information Development AND Exhange INC. / Hidrosadenite Information Developpment et Echange INC., Mississauga Ontario, Canada. Dr. Gregor Jemec, Denmark, was one active medical member of this organisation.
Members of the original HIDE community were involved in the creation of HS-USA Inc. Brighton, Michigan, United States. HS-USA was a non profit patient & caregiver focused organisation that raised awareness, provided support, encouraged, stimulated, facilitated and funded medical research. Michelle Barlow, a person with HS from San Diego, California, was, very briefly, a member of the board of trustees of HS-USA late 2003 or early 2004.
The Hidradenitis Suppurativa Foundation, Inc., San Diego, CA., began life as a United States non profit corporation October 12, 2005. Founded by two European doctors Dr.’s Ralf Paus and Christos Zouboulis from Germany, and two people with HS- Michelle Barlow from the United States, and myself, Rob Howes from Australia. Dr. Gregor Jemec was a founding medical board member of this organisation. Sylvia Shawcross, Canadian citizen and co-founder of H.I.D.E. accepted our invitation for honorary membership of the HSF Management Board.
Today’s global medical/scientific non-profit organisation’s dedicated to Hidradenitis Suppurativa (HSF, CANADIAN HSF,EUROPEAN HSF, SWISS HSF & RESOVERNEUIL may be the spiritual sons and daughters of H.I.D.E., a patient-led initiative. Remember.
Origin of the HSF, Inc., San Diego, United States.
My name is Rob. I was born in Penang, Malaysia mid-1967. I have relapsing/ remitting "Hidradenitis Suppurativa" (HS). My HS was first diagnosed about 2000 while I worked for the Royal Australian Navy as a Medical Sailor (Underwater Medicine sub-rate).
WE ARE HS DISCONNECTED.
"This study of the pain experiences in HS reveals a disconnect between patients and practitioners." Fiona Cowdell, Birmingham, UK.
24 May. Impactful. On many levels. Just shy of six thousand and seven hundred views; four thousand and three hundred and fifty downloads. 'In the top 25% of all research outputs scored by Altmetric.' More than that: this is who we are. We are not pharmaceutical industry cheerleaders, nor are we "HS Expert" boosters.
Key term: Hidradenitis Suppurativa.
https://figshare.altmetric.com/details/52677407