Renate Shashoua helped found the Swiss Alpha 1 Association in 2016, with a total of 15 members. Three years on, the group’s membership has grown to 80 and Shashoua, the organization’s treasurer, is a well-traveled advocate. She wants to help other patients get informed and live full lives.
When did you first notice you had breathing issues?
I first noticed that I had breathing difficulties when I was 50 and walking in the mountains in Switzerland. I also did folk dancing and realized that I was perpetually out of breath. Friends and acquaintances routinely advised me to “get into shape,” suggesting I was simply not physically fit.
How did you then get confirmation that you had Alpha 1 antitrypsin deficiency?
In November 2011, I filled out a questionnaire that is distributed on an annual basis by the Swiss Lung League, which supports people with lung and breathing disorders. Based on the results, I went to my doctor and suggested that I was suffering from COPD (Chronic Obstructive Pulmonary Disease), to which his answer was: “You can’t be. You have never smoked. It’s probably just bronchitis.”
He nevertheless referred me to a specialist and the following January I was diagnosed as suffering from Alpha 1 Antitrypsin Deficiency.
How did you go about seeking support for your condition?
Following my initial diagnosis, I became aware of only one other person in Switzerland with Alpha 1 Antitrypsin Deficiency and this person was actually receiving the appropriate therapy, while I was not. I took to the internet to try and seek help and make contacts. All of a sudden, I received an email from a Belgium-based Alpha 1 patient, Frank Willersinn.
We agreed to meet, together with the current head of the Austrian Alpha 1 patient organization, Ella Geiblinger. On that day in 2016, the Swiss Alpha 1 organization was born, with its inauguration attended by a total of 12 people, six of which were appointed to the board. Three years on, our membership is up to 80.
What is the greatest challenge for Alpha 1 patients in Switzerland today?
Well the first issue is simply being able to find them! We would like all COPD patients to be tested for the deficiency. If a person is discovered to have Alpha 1 Antitrypsin Deficiency, then all the family members should also be tested and this is done far too rarely in Switzerland. For example, I am the eldest of seven siblings and the first to have been diagnosed. Some others also have the condition or are carriers.
What would you say to a person recently diagnosed with the condition?
I think they have to stay active and stay fit. It is important to get out and do everything of which you are capable – don’t let the illness govern you and force you to stay at home. At the same time, though, you need to know your limits. For example, now I only walk up a maximum of two flights of stairs.
What does being part of an Alpha 1 organization offer patients?
Patients should join the organization and that way they can exchange ideas and experiences. We are also creating a questionnaire for new patients to take to their doctor, so they ensure that they receive the fullest amount of information. Moreover, some patients are intimidated by doctors and we want to mitigate this. We want doctors to be seen not as gods, but as partners to patients.
What is daily life like for you?
Well my great passion is travelling and sometimes this can be quite complicated because when I exert myself I need to take additional oxygen. I use an oxygen concentrator that I can recharge at home or with a car battery. I need this, for example, when I go shopping and have to lift bags, or when I walk uphill. I also receive an infusion once a week. Every Monday morning I go to the hospital to get this.
However, when I travel, I don’t need the oxygen as long as I am at sea level. We have rented a house on the Adriatic Sea, where I feel comfortable and we spend about four to five weeks there. I take my medication with me and receive treatment from a doctor in Ravenna, which is about 20 minutes away from the house by car.
So I live a full life, which is so important, and it is this message that I want to convey to all our members. Despite the illness, you can do everything that is possible for you and you should not let your life be restricted by this condition.