Zoe Ridgeway: My BHD Journey

For Rare Disease Day 2025, we want to share Zoe Ridgeway's story. Zoe was diagnosed with BHD in 2013. We spoke with Zoe to learn more about her diagnosis and how BHD has impacted her life. Every patient's story is unique, and by sharing them, we can raise awareness and support those living with rare diseases. Read Zoe's story below.

I’m Zoe Ridgeway, 56 years old and live in Surrey, England.  I’ve been married for 28 years and we have a son 26 and a daughter 25.  My hobbies are Bridge, Yoga, Padel, eating out, walking our dog, travelling and meeting up with family and friends.

Can you tell us a bit about your BHD diagnosis?

It was Easter 2011 and I’d had a really bad cold with a hacking cough that lasted about 3 weeks.  I went to my surgery and was prescribed a course of antibiotics. They didn’t work and I still felt unwell. I saw another GP and was prescribed another course of antibiotics, still no joy.  So having seen a 3rd GP, they finally listened to my chest and thought it didn’t sound quite right.  I was sent off for a chest X-ray.  My GP phoned a few days later and told me I had a pneumothorax. I had to google the word and was shocked to learn that my right lung had collapsed, and I had been walking around like it for at least two weeks. No wonder I was struggling to walk and go about my normal business.

Fortunately, after a few nights in hospital with a nebuliser, my lung re-inflated.  Sadly, it wasn’t to last and a few months later my lung collapsed again. Back into hospital, I had to have a chest drain put in and the decision was made to operate and perform a Pleurodesis, a procedure where they stick your lung to the chest wall.  The doctors suspected that I may have LAM, a rare lung disease which often results in a double lung transplant!  They wanted to do further tests, which involved a lung biopsy… not a pleasant thing to have done.

How did your family find out about the condition?

While I was waiting for an appointment, my mum was admitted to hospital with a collapsed lung, which again they had taken a while to diagnose.  Fortunately, we live quite close to each other, and she was admitted to the same hospital and by chance had the same respiratory doctor.  Slowly the jigsaw pieces were coming together.  Thankfully I didn’t have LAM, as this is not a hereditary disease. 

We went to Nottingham to see Professor Simon Johnson and had a blood test used for genetic testing to establish the results.

On the 4th September 2013 I received a letter in the post confirming that I had BHD.  This date had significant meaning to me, it would have been my maternal grandfather’s 100th birthday.  He had joined the army as a young man and served for 28 years working his way up through the ranks.  It was his dream to become an Officer, he went for a rigorous medical and sadly they told him he couldn’t be promoted due to “shadows” on his lungs. I firmly believe he had BHD, although we will never know for sure!

Once my Mum and I had the diagnosis identified, the rest of our family were tested to see if anyone else carried the gene. This is done with a simple blood test, and we saw a genetic counsellor that guided us through the process, as it can be shocking to find out.  I have two children, a son, who is clear, but I have passed on the gene to my daughter.  The counsellor has advised her that once she decides to start a family, then she could have IVF to make sure that the gene is not passed on.  This of course will totally be for her and her partner to decide.

The other test we had was to have our kidneys scanned.  My mum was clear, but they found a tumour on my left kidney.  In June 2014 I had a partial nephrectomy, which left a huge scar on my back.  Although it was a high grade 3, it was contained in the kidney, and I did not need any chemotherapy or radiotherapy.  Since then I have had annual MRI scans on my kidneys and an annual visit to my respiratory doctor. 

How has having BHD changed your life?

Of course I would rather not have BHD, but as rare diseases go there are far worse ones out there. I’ve always had a very positive outlook on life and since my diagnosis I’ve lived life to the full.  I love travelling, it’s my real passion. I have done many long-haul flights to Asia, Africa, India and even down to Antarctica, completing visiting all 7 continents!  I’ve been told I can do anything in life except scuba diving, which thankfully I did in my 20’s before my diagnosis, on The Great Barrier Reef and The Red Sea. Also, I can’t parachute out of a plane, something I’m not too worried about missing out on.

My advice to anyone going through BHD is to live life to the full and don’t let it hold you back.