My Journey with Aspergillosis

My name is Marcela Candeias.

I live in Portugal (in Alentejo - near the sea).

I am 56 years old. I am married.

I am lawyer. I share my office with my husband who is lawyer too.

I am asthmatic since I was 14 years old.

I am allergic to dust, mould, tobacco smoke, old papers.

Anyway, my asthma was under control.

I had a normal life: I practiced sports, I travelled abroad, I worked (my job it is very stressful).

In 2020 everything changed.

About 15 days after using a mask, I started coughing.

The symptom that got worse, despite trying different types of masks.

Between lockdowns, I managed to have pulmonologist appointments but the diagnosis was always the same:

“I was having an asthma attack and that I had to continue maintenance medication”.

No tests or analyses were asked

Meanwhile, the symptoms worsened.

I started to lose weight, I always felt very tired and my mucus turned from a greenish colour to black; I have never had breathlessness or wheezing.

In March 2022, after being hit by a coughing fit for several hours, I lost my strength.

I realized that I had to seek a third opinion because my intuition told me that what I had was definitely not an asthma attack!

The third pulmonologist requested specific tests (various types of allergies including Aspergillus fumigatus, Niger, IGes (immunoglobulin E and CT. About a week later, he had the diagnosis - part of my lungs were full of consolidated mucus, evidencing some bronchiectasis .

Because of that it was necessary do a bronchovideoscopy.

After this exam I became extremely weak and days later I found out that two fungi (Aspergillus fumigatus and Aspergillus Niger) and bacteria were living in my lungs.

Finally the diagnosis – Allergic Bronchopulmonary Aspergillosis (ABPA)

My life turned upside down.

I was a healthy person, besides the asthma. I had a normal life.

Since the ABPA diagnose my life is a challenge.

I had treatment with antibiotics, antifungals (Voriconazole) and prednisolone. I had many flares (relapses).

It is very difficult to live with the side effects of medication.

I felt physical and mental fatigue, anguish, anxiety, fears, difficulty in managing the side effects of the medication and inability to deal with an unknown (rare) disease and with its limitations.

I have tremors, sweating, swollen face and lips, joint pain, muscle pain, insomnia, depression, mental confusion, mood swings, headaches, pressure in my yes, tiredness, anxiety, lack of strength, general malaise. I always have a red face and the feeling of being burned.

After two years taking prednisolone, we discover that I am allergic to that drug and hydrocortisone.

Now I am taking Methylprednisolone and I am much better.

Sometimes I feel very ill because of medication.

Sometimes I feel frustrated, sadness, anger and depression.

Since the diagnosis I have been unable to work for several periods.

Since last August I am doing the biologic – benralizumab. I feel much better….

But my life is different.

My life revolves around the disease.

I stopped travelling.

I stopped doing the things that I liked.

Every day I have to establish priorities.

Anyway, I still practice pilates, yoga and water aerobics.

Every day I tried to do my best.

At first, the doctor who made the diagnosis was my first support. He saved my life!

In Portugal we know little about the disease. I prefer say that nobody knows anything about the disease!

At first, I felt very alone.

My husband and I, we have been dealing with the disease without any support.

Nobody knows the disease.

I did a lot of research.

I found NAC.

Everything I know about ABPA I learned through NAC and with the support group.

I am very grateful to be part of that group.

I feel enormous affection for everyone.

After, I found The Aspergillosis Trust Support Group and Lisa.

All of them are my daily support and became my family and friends.

One day, I had a meeting with Lisa of The Aspergillosis Trust Support Group.

I asked her for help on how to raise awareness of the disease among patients and doctors in Portugal.

After a meeting with Lisa I was invited to join the ELF Patient Advisory Group.

It is very important to know the disease because we can understand what is happening with us. With knowledge we can ask doctors concrete questions about the disease, medication, side effects of medication, quality of life..

Knowledge is power!

My greatest wish and project is to raise awareness of the disease in Portugal, among doctors and patients.

It is very important to discuss aspergillosis in health centers, schools and workplaces.

I am spreading my experience with others. This can help them.

If you have been newly diagnosed, I would recommend that you make a lot of research.  Ask everything. Be aware of the disease.

Join groups like PAG, NAC or Aspergillosis Trust Support Group.

Remember Knowledge is power!

And - you are not alone!

Despite being a chronic, rare and debilitating disease, I believe it is possible to find balance and have a normal life.

“A different kind of normal”.

It is a path of learning, self-knowledge and growth.

It is not easy but it is not impossible...

Marcela 6th June 2025

PS. Sorry my English and my mistakes.