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Portraits of light

The amazing work below comes from Montreal’s photographer Santino Matrundola.  The vision for the project comprises a single photograph of each of the eleven participating acromegaly ambassadors, along with a short story describing the unique experience each has had with this condition. The project is called The Light of Day and it’s dedicated to shining the light on how acromegaly patients experience and overcome their disease, through the power of photography. You can click on each photograph and expand it to view them in more detail.  Enjoy!

Adam Vagi: Through the support of his wife, friends and family, doctors, and fellow peers with acromegaly, Adam has found strength throughout his journey with acromegaly. By founding an acromegaly support group in Manitoba, Adam has seen that his story can help others who are just beginning their journey with acromegaly. He believes the more voices to bring awareness to acromegaly, the better: “We are stronger together.”

 

Anne White:  Anne is inspired to raise acromegaly awareness as many patients go undiagnosed for years; in fact, she believes she had acromegaly for over 20 years before she was diagnosed. Anne’s husband has offered her constant support during her acromegaly journey; she is also fortunate to have experienced and compassionate professionals such as her family physician, who instigated her diagnosis and continues to give her courage and confidence. Having accepted her diagnosis, Anne “sees the light” by keeping a positive attitude and being thankful for all that is good in her life.

 

Brent Baker:  Brent’s motivation to raise awareness for acromegaly stems from knowing he can contribute something positive to others with this condition or those seeking treatments and cures. He credits his wife’s knowledge, medical advocacy skills, patience, and compassion for helping him overcome the many challenges of acromegaly. Brent advises new patients to find a supportive caregiver, as well as to educate themselves on the condition so they can become their own advocate.

 

Deanna Badiuk:  Motivated by a desire to meet and help others with acromegaly, Deanna started the Vancouver Acromegaly Support Group in 2013. She believes knowledge is power: through understanding their condition and its effect on their bodies, patients can have a better quality of life. Deanna “sees the light” through imagining a brighter, better future for acromegaly patients: one where an earlier diagnosis is possible, and the reality of acromegaly patients is better understood.

 

Dianne Sauvé:  Dianne credits her positive attitude and her drive to learn more about her condition with helping her overcome the many challenges of acromegaly. She first “saw the light” when she was invited to take part in this project: it was the first time she came face-to-face with others who share her condition. Suddenly, she no longer felt alone. Since then, Dianne has become an advocate for acromegaly patients near her by creating the Acromegaly Ottawa Awareness and Support Network Facebook group.

 

Heather Elder:  Heather’s moment of “seeing the light” came during a conversation where someone who’d been on the periphery of her journey with acromegaly said, “But everything’s fine now, right?” It was then that she thought, No, no it’s not. Heather realized she needed to stop minimizing her symptoms and show that this lifelong condition impacts every facet of her life. The support of Heather’s family, friends, colleagues, medical team and the online acromegaly community have been instrumental in keeping her spirits up and in not letting her condition control her life.

 

Mark Logtenberg:  When Mark finally met others with acromegaly and shared his story, he realized he wasn’t alone. So many of the problems Mark faced were shared amongst others with acromegaly. Mark’s family has offered him unwavering support since he was first diagnosed with acromegaly 25 years ago. Conscious of the fact that many others are not as fortunate to benefit from such a support system, Mark feels an obligation to be part of the support system for others with acromegaly to help them in their journey with their condition.

 

Paula van Nostrand: After years of being told it was “all in her head”, Paula “saw the light” when she finally had answers to explain how she had felt for years. Through spreading awareness and educating the medical community, Paula wants future patients to be diagnosed and treated in a timelier manner to prevent the long-term issues that come with a delayed diagnosis. Paula credits exercise with helping her throughout her disease and recovery, as well as the support she has received from her friends, family, healthcare team, and acromegaly support groups.

 

Peggy MacDonald: Peggy’s desire to help others not feel alone – no matter what stage or condition of the disease they are in – has motivated her to raise acromegaly awareness. She is the founder of the first Acromegaly Support Society in Nova Scotia. For Peggy, “seeing the light” was acknowledging the progress the Ambassador Program has made in support of acromegaly patients. The Program has opened a door for her to have conversations with other patients who understand what living with acromegaly feels like.

 

Santino Matrundola: For many years of his life Santino felt as though he’d been sleeping until he found out he had acromegaly. the day he awoke from his first surgery was when he began to see the light: it was when he “…started actually living [his] life”. Through his talent as a photographer, Santino has brought more awareness to this rare condition. His role as an ambassador has helped him grow into a more confident and stronger individual and has provided an opportunity for self-healing.

 

Viola Hsieh: For Viola, her 3-month-old daughter has given her the strength to never give up. Through her role as an acromegaly ambassador, she has others like herself and has realized she is not alone. By “seeing the light”, Viola has not only helped others understand acromegaly, but she has learned to love herself more in the process as well.