Past chairman of AMD Alliance calls for greater assistance for AMD patients

HONG KONG — The former chairman of the AMD Alliance, who is also an age-related macular degeneration patient himself, called for greater assistance for AMD patients after they are diagnosed to help them cope with the impact of their disease.

"We don't have a global approach. We have a fragmented approach on low vision aid. We have a fragmented approach on helping us to deal with it. There's a huge disconnect. There is a huge disconnect between the clinic and the after care," MacDonald Curran said during the Alliance-sponsored session at the World Ophthalmology Congress. "We need the information. We need the education. We need to understand."

Mr. Curran returned to Hong Kong on July 1, 8 years after he left due to his diagnosis of AMD, and asked an audience of retina specialists to do more than just assess their patients' disease.

"I attended clinics in Hong Kong, Northwestern in Chicago, Moorfields in London and one near my hometown in Scotland," he said. "All that ever happened was an assessment of my disease, my retina damage, etc. And that was it. I was out there in the corridor with many others feeling my life had completely and totally failed."

Speaking from his own experience, he shared the feelings of depression, helplessness and even suicidal thoughts that an AMD patient may have after hearing his or her diagnosis. Studies have shown, Mr. Curran said, that 73% of AMD patients surveyed have admitted to some type of depression.

"Overnight I was suddenly back in my hometown in Scotland after being away almost 40 years, walking the beach, listening to Andrea Bocelli, trying to figure out what to do with my life," he said. "I felt absolutely useless. I felt ashamed. And I felt so many emotions detrimental to myself."

He said physicians need to offer some direction for their patients, pointing them toward resources such as support groups and talking with them about the psychosocial side effects such as Charles Bonnet syndrome.

"I had clinicians who were wonderful at their job, looking at their disease, trying to figure out how to overcome it, trying to figure out how to cure it. ... But there was no signpost from there to help me with my depression, to help me with my Charles Bonnet syndrome, to help me with my mobility, to help me with my low vision aid," Mr. Curran said. "It's so important to signpost the way to go. ... There's a lot to be done. There may not be in a clinical volume, but there's a lot you can do to make a life much more bearable."

Today, Mr. Curran is a "happy man" with a mission to become the spokesperson for AMD so the patient can speak for himself.