The Tribune

When The Tribune first interviewed Julia Browning at the beginning of this year, she was faced with a harrowing decision – undergo a ground-breaking, but risky treatment for her relapsing remitting multiple sclerosis (RRMS), or face the probability that she would be confined to a wheelchair within two years as her body was steadily declining.

Mrs Browning chose the first option, and today she is getting back to living her normal pre-MS life once more. She no longer has to worry about poor eyesight, restless leg syndrome, fatigue, poor balance, and loss of bladder and bowel control.   

“I reached my six-month, new life birthday on September 7, and had hoped to get my MRI the day before that so that I could have a double celebration, but I had to delay it because of Hurricane Matthew heading our way,” she told Tribune Health.

Mrs Browning, the wife of Palm Cay Chief Executive Richard Browning, said she felt fortunate because she was finally healthy enough to help with the cleanup after the storm.

“I remember clearing (the garden) and thinking to myself how fortunately (my doctor) had recently given me permission to get back into working in the garden again. This is something that I have missed because I was struggling with fatigue in the past. Now I feel like Matthew has wiped the slate clean and I am able to start over with the garden,” she said.

In March of this year, Mrs Browning travelled to Russia to have an autologous haematopoietic stem cell transplant (HSCT) to stop the progression of her RRMS, accepting the risk that the procedure could kill her.

But as a mother of two young sons, aged 14 and 11, who wanted to be there for her family for many years to come, it was worth the risk.

In Russia, she was treated at the AA Maximov Hospital, Pirogov National Surgical Centre in Moscow. Her doctors were Denis Fedorenko and Nikolay Faddeev.

“Life has been stressful since my return and I was nervous to receive my results, as Dr Fedorenko said our lives had to be stress-free – difficult to achieve,” she said.

Two months after returning to the Bahamas after her treatment, Mrs Browning had to unfortunately have her beloved dog Baxter put to sleep due to severe heart disease.

“Sadly, I had to let my boy go, which is something I am still struggling to come to terms with,” she said.

Following her loss, her family thought it best that Mrs Browning have a change of scenery. Together, they travelled to Canada. But there, the next challenge awaited her.

“When we were in Montreal I picked up food poisoning and was told I had to wait four hours to see a doctor at the local clinic. I refused to sit amongst sick people, as I was still vulnerable to germs. I headed off to the pharmacy and soon discovered that no one was prepared to assist me because I was a ‘special case’. Our youngest son Googled how to treat it and I took electrolytes and plenty of fluid until I felt stronger again,” she said.

While in Montreal, Mrs Browning took up walking, approximately 10 miles a day while sightseeing.

“My husband had told me that I would need to rest, but I felt fine and refused to spend my time in a hotel room. Dr Fedorenko’s words, ‘Listen to your body’, still remain in my head, but I feel strong and have always been fit. While in Quebec, we went to Montmorency Falls. There were 487 steps to the top of the falls, so my eldest son and I decided we were going to walk it. My husband warned me against it and I asked him why. He said: ‘Because you are ill. You have MS.’ My response was: ‘Correction. I had MS!’ The view from the top was glorious and the achievement was great,” she said.

Once she returned home to Nassau, she decided to keep up the walking. Having been an avid swimmer in the past, she also took up swimming.

“I confirmed with Dr Fedorenko that I could swim in a public pool and then contacted one of the women who swims in the mornings. She told me to come down and give it a try. The coaches, Nancy and Andy Knowles at Swift Swimming, were fantastic, welcoming me to join the team for a week to see if I wanted to do it. I used to be a swimmer, so I very quickly got right back into training again. I am now a member of Swift Masters and swim a mile, or slightly more, each morning after I drop our sons at school. Some days I am strong, but some days I really have to push myself,” she said.

Feeling healthy, walking daily and swimming as much as possible, Mrs Browning felt her recovery was going smoothly when she suddenly got a scare close the six-month mark following her stem cell transplant. This was especially worrisome as she had experienced a similar setback with a previous treatment in 2014 – a treatment which ultimately failed.

“I woke up with a numb left ankle and started to panic. My previous stem cell treatment had gone so well until I hit the six month mark and then the numbness started to creep back in. I thought the same thing was happening again. I contacted Dr Fedorenko, who told me he thought I had just overdone it a little, so I took a break from swimming the next day. Things returned to normal, thankfully,” she said.

Nevertheless, waiting for her brain, thoracic and cervical MRI results to see whether the treatment had worked or not was extremely nerve-racking. 

The moment she got her results from her radiologist in Fort Lauderdale, she forwarded them to Dr Fedorenko in Russia. He confirmed that her disease had been halted. 

Mrs Browning is now looking forward to her new MS-free life. Her sons even decided it was time to adopt a new dog.

“Storm, our new pup, arrived one week before a major hurricane hit the Bahamas. I gave her the name because I felt that we would have a hurricane this year. I now continue to swim in the mornings, but I have had to reduce my walking down to eight miles per day, most of it being done on my cross-trainer, which is boring, until Storm is ready to hit the road with me. By the time this goes to press, Storm will have her brother living with us, too,” she said.

Mrs Browning said she keeps in contact with many of the patients who were receiving HSCT in Russia at the same time as her. She also belongs to Facebook groups of patients receiving treatment at the different centres around the world.  

“My recovery has been nothing like other patients. I was told it would be a roller coaster ride. So far, I have just been seeing improvements. I had the usual stiffness and sore legs once I returned home, but I had expected that and just pushed it to the back of my mind and continued with life. All that has since subsided. I believe we have to have a positive frame of mind to deal with our illness,” she said.

“My hair grew back, not patchy at all, but as another patient described it, like having Brillo pads stuck on your head.  My head looked like I was growing wool, so my dear friend and hairdresser, Kathryn Lightbourne, kept my hair under control and had me looking respectable. Thankfully, my husband and youngest son do a regular shave for me, as I want the curls off of my head. My husband keeps asking me to let it grow again...in time, when it starts to grow straight. Right now I am loving the get up and go freedom of this super short hair!”

Mrs Browning said she is incredibly grateful to Dr Fedorenko and the entire team in Russia for giving her back her life back.

“I was positive, with all my improvements, that it had worked, but after I had been caught out previously with the other treatment that was meant to ‘cure’ me, I needed to see it in black and white before I would believe anything. I am currently looking for a local neurologist to work with me and follow my progress. I need someone who is open to the HSCT treatment,” she said.

And Mrs Browning still hopes that one day all obstacles can be removed so that Bahamas can become a leading centre for stem cell treatment.

“I would love our country to become one of the world leaders in this treatment, along with Israel, Russia, Germany, the UK , Mexico, Singapore and South Africa,” she said.

“I believe I contracted this disease to be able to help others, and that is my passion in life. My dream would be for insurance companies to cover this, as a once-off treatment costs less than the annual price of drugs for a patient with MS. At some stage the world has to stand up to ‘Big Pharma’ and I really believed that the Bahamas would have made a stand in this...Come on Nassau, let’s take charge and do this! It would be great for tourism and great for our economy. Let’s add our name to the list of countries offering a ground-breaking treatment which halts this debilitating diseases.  For me, I continue to go from strength to strength and do not regret my decision in having HSCT.”