Alpha Stories

Published on Thursday, December 3, 2015

Alpha-1-To-One magazine Winter issue in your mail now

Alpha-1-To-One magazine Winter issue in your mail now

The Winter 2015 issue of Alpha-1-To-One magazine is in the mail to some 27,000 people with free subscriptions and is now available online. Read the cover story, "A New Beginning: Frank Willersinn gets second chance at life and makes the most of it:"

Frank Willersinn, MD, had an out-of-body experience.

A deadly strain of streptococcus bacteria infected his left hand in 1996, and quickly spread to other parts of his body. He was airlifted to a hospital emergency room, where doctors told him he was not going to make it.

“They said, ‘Well it’s too late. We cannot do anything. Bring over your parents,’” Willersinn recalls. “My parents and other family members came. They said, ‘Goodbye.’ The doctors put me into a coma so I would not suffer.”

He felt himself slipping away: “I was outside of the world, and it was cold and it was dark and there was nobody, and it was not fun at all,” he says. “It was out of life.”

But he survived. Doctors amputated his left arm to cut off the infection, and he recovered. “I don’t know how it was that I came back,” says Willersinn, 62, of Brussels, Belgium. “But I’m glad I’m here today to speak with you.”

Willersinn, who was later diagnosed as a ZZ Alpha, has made the most of his new lease on life. In recent years he has dedicated himself to expanding the care that Alphas receive in Europe and the rest of the world. He is particularly concerned with ensuring that all Alphas have access to augmentation therapy, regardless of where they live.

Towering above his colleagues at 6’5’’ and flashing a disarming smile, Willersinn is chairman of the Steering Committee of Alpha-1 Global, and became a member of the Alpha-1 Foundation’s Board of Directors in July. He speaks softly and projects charisma, authority and friendliness, all at once.

“Frank is immediately likable, intelligent and friendly,” said Gordon Cadwgan, the Alpha-1 Foundation board chair. “He is obviously concerned about Alpha-1 and wants to raise awareness world-wide, increase access to therapy, and improve the lives of all affected by Alpha-1. He has lots of energy and enough worldly savvy and contacts to accomplish these goals. We on the Board are glad he has joined us.”

Gonny Gutierrez, the Alpha-1 Global director, agrees. “Frank is a joy to work with,” Gutierrez says. “He’s personable, reliable and dependable. As an MD and patient himself, he’s well-informed in the area of Alpha-1, and an astute representative for Alpha-1 Global with patient organizations and partnering organizations in Europe.”

Willersinn was born in Heidelberg, Germany in 1953, and moved to Brussels in 1972. He obtained his medical degree from the Université Libre de Bruxelles, Brussels in 1979.

Later, he went into business for himself, distributing non-toxic products. He got the idea for his business in 1984, while painting the ceiling in his house. He breathed in so many chemicals from the paint that he literally fell off the ladder.

“These products were so toxic, I couldn’t take them anymore,” he says. “So I looked for better products. We started a kind of bio-friendly, alternative green business, ecological and non-toxic.”

Naturellement SA opened in 1988, distributing non-toxic paint made from plants. He later expanded to producing other non-toxic products, including mattresses without synthetic fibers and insulation without mineral fibers. The company also distributes tables with adjustable heights, furniture made of wood held together with non-toxic glue, and other eco-friendly products.

In 1998, two years after his near-death experience, he was in a doctor’s office getting a routine medical check-up. His wife, Regine, checked a box on a medical form asking which blood tests he would like to take. Without meaning to, she checked the box for Alpha-1.

Soon after that, he got a call from the lab. They told him he had very low levels of alpha-1 protein in his blood, and a second test was needed to confirm it. The second test yielded the same result, and he was diagnosed as a ZZ Alpha. But Willersinn, then 45, took no immediate action, since he had no breathing problems or other symptoms.

However, 10 years later, he decided to take responsibility for his condition. He researched what it meant to be an Alpha, got a lung scan, and started taking augmentation therapy in Belgium.

“It was a kind of maturity” that led him to take Alpha-1 seriously, he said. Soon he began to think of other Alphas, too. He co-created the first Belgian patient group in 2012, operating it informally without a constitution. Later, he formalized the group as Alpha-1 Plus asbl, giving it a formal not-for-profit structure. He is also a member of the German patient group Alpha-1 Deutschland.

Today, Willersinn – who speaks English, German and French – has become involved with other Alpha-1 support groups around Europe. He participated in the International Alpha-1 Patient Congress in Barcelona, Spain in April 2013 and in Barga, Italy in April of this year.

One of the key issues he addresses often is the lack of reimbursement for augmentation therapy in many European countries. Some governments are not convinced that augmentation is effective, and therefore will not cover the costs or reimburse Alphas for it. This places it out of reach for many people with Alpha-1. There are tens of thousands of Alphas in Europe, but only a small fraction of them are receiving augmentation therapy, Willersinn says.

The Belgian public health  department does not reimburse augmentation therapy costs for Alphas who were diagnosed after July 2010. That leaves an odd system in which any Alpha diagnosed before July 2010 is reimbursed for treatment, but no one diagnosed since. Willersinn has met with two members of the European Parliament, asking them to write to the Belgian Minister of Health, seeking reimbursement of augmentation therapy for all Alphas there. Both members complied.

Willersinn believes in bringing Alphas together across borders to push for access to the treatments they need. “If the patients are organized in groups and associations, they can have a political impact on public health problems, and that’s the first step, because it makes sense that Alphas and others are treated in all countries,” he says.

As chair of the steering committee, he regularly works on Alpha-1 Global’s mission, “to create a collaborative global network of Alpha-1 organizations and patients to increase awareness, detection and access to care for Alphas around the world.”

A recent example: In October, he helped to bring 12 Alpha-1 patients to a meeting in Lausanne, Switzerland to launch a Swiss Alpha-1 patient organization. “There was no structure for Alphas in Switzerland before, though more than 20 patients there are treated with augmentation therapy,” he says.

“Frank’s unrelenting passion for Alpha-1 patients and his willingness to assist with the set-up of new organizations in Europe is much appreciated and very effective,” says Gutierrez. “He and I work hand in glove, since we’re very similar. We are both no-nonsense and no drama. We honor people, respect differences, and just get the job done."