Macedonia's Lice v lice Embraces Rarity with stunning portrait series

Macedonian street paper Lice v lice (Face to face) put health in focus recently with a special edition that marked Rare Disease Day 2015.

The paper's Embrace Rarity campaign featured a stunning series of portraits that paired people affected by rare diseases with well known personalities.

It was produced in association with “Holistic”, the association of citizens for rare diseases Life With Challenges and the National Alliance for Rare Diseases of R. Macedonia.

Photographer Tomislav Georgiev worked with the Lice v lice design team, coordinated by Nebojsha Ilijevski, and stylist Irina Tosheva and make up artist Viktor Mirchevski to tell the stories of people living with rare conditions such as Hemophilia, Gaucher’s disease (brittle bone disease), Strumpell’s syndrome (where muscle turns to bone) and Pulmonary Hypertension.

Patients posed for photos alongside well known faces from the country's music, sport, TV and fashion industries. Many of the images were later digitally enhanced by graphic designers  Zoran Inadeski and Ruzica Mandichevska (Ruki Chuki).

Explaining the idea behind Embrace Rarity, Lice v lice editor Maja Nedelkovska said the aim was "to highlight that all rare disease patients are faced with big challenges in their lives."

She added: "Some of them are alive and well thanks to vital medications and treatments, but for others, there is no cure for them yet. The campaign stresses the importance of understanding them, giving a hand and embracing them, but also the need for constant research in new treatments."

The Embrace Rarity portaits were unveiled at a special exhibition in Skopje, and were displayed alongside short texts explaining each rare disease patient's story and the daily challenges they face. These were also published in a special edition of the magazine (cover pictured above).

 
Ana-Marija and Vera Miloshevska

The colours in Ana-Marija's (right) daily life are difficult to imagine. Delayed development, affected coordination, breathing difficulties, and lowered communication and cognitive skills are the characteristics of the RET syndrome, a disease that only affects women.





Iva Petrevska and Dani Dimitrovska

Living with Epidermolysis Bullosa means Iva’s skin is as delicate as a bubble. The slightest daily childhood activities cause painful sores on her body that require constant care and dressing, and even slight pressure, a tiny injury or scratch can threaten her health.

Vesna Aleksovska and Tanja Kokev

Having Gaucher’s disease made Vesna's (far left) bones prone to fracturing - even a slightly stronger embrace could cause a broken bone or a bruise on her body. After receiving therapy for five years, her state is now stable and she can lead a normal life.

Viktor Dimitrijoski and Bubo Karov

Viktor (far left) has never tasted chocolate, pancakes, ice-cream, walnuts, eggs, soy, meat or white bread. He has Phenylketonuria (PKU), a rare genetic condition makes body unable to break down a substance called phenylalanine, which builds up in the blood and brain. PKU is treated with a special low-protein diet, which reduces the levels of phenylalanine in the body and prevents brain damage.

  
Azemina Kurtishi  and Ognen Janeski

Azemina (far left) is the first patient diagnosed with rare disease Gaucher to receive appropriate therapy from the Macedonian state. Without it, this disease in its last stage can completely immobilise patients, causing discomfort and inflammation of the liver, osteoporosis and shorter life expectancy.


You can see more photos from the series, and learn the stories behind them, here. 

The D.C. photo blog putting a face on homelessness

American street paper Street Sense recently reported on an engaging and empowering photo blog putting a name and face to the people experiencing homelessness in Washington D.C..

Street Sense vendor Robert.

"It saddens my heart too to see people passed by in the street. People won't even acknowledge a homeless individual or a homeless veteran - or even a veteran seeking assistance. Homeless people, and homeless veterans, are people too. They don't need a hand out, but a hand up."

Street Sense vendor and contributor Robert is now a recognisable face on the streets of Washington D.C. where he sells the street paper, but it wasn't always that way for the formerly homeless veteran.

He knows what it's like to be in need and to feel ignored and invisible, which is why he was happy to be featured on Person First Project, an engaging photo blog  that aims to break down barriers between people experiencing homelessness and those who pass by them every day.

Shiza Farid, Robyn Russell and Julie Schwartz created the Person First Project in December 2014 as a way of reminding people there is a person behind every unique experience of homelessness and poverty.

Chon: "If it weren’t for Street Sense, I'd probably be selling drugs."

The trio partnered up with the National Coalition for the Homeless to connect with people willing to share their own experiences of homelessness. The project highlights these stories via Facebook and Instagram, including a chat with Street Sense vendor Chon, who explains how selling a street paper is helping him build a better future.

"When you stop and talk to people who are experiencing homelessness, you hear that they're really just like everybody else. They are moms. They are dads. They are daughters. They are sons," said co-founder Robyn Russell. "If we could share this with other people, I think it could be really powerful because there are a lot of misconceptions around homelessness."

Russell says the positive comments left on each of their Facebook posts is testament to the power of storytelling as an advocacy tool, and that first-person stories can help change perceptions and open people eyes in a way that a fact sheet full of stats, facts and figures cannot.

Regarding the public who pass by people experiencing homelessness every day, she added: “It’s not that people don't care. I think they do care and I think they don't know what to do. That's how we felt.

"We hope our project can open their eyes and help them feel like maybe they can stop and talk to somebody."

This post is based on an article by Jennifer Ortiz originally published in Street Sense. It has been made available to other INSP members via our News Service here.