Answered prayers... the battle for multiple sclerosis medication
When Natalie Brennan discovered that she had multiple sclerosis, she knew there were some excellent drugs on the market. But, she tells Joy Orpen, she hadn't bargained on a battle to get the medication most suitable for her needs
Natalie Brennan (26) fits the bill of the quintessential, modern young woman, living happily in a bustling metropolis. Though she is petite and has delicate features, she also looks fit and healthy. So it's something of a shock to learn that there have been times recently when she was too weak to walk, and others when it felt as if bubbles were exploding in her throbbing head.
Natalie is not sure when it all started, but she was already experiencing odd symptoms when she was growing up in Castletownbere, Co Cork. "I'd get weird sensations in my legs for a day or two, then they wouldn't come back for months," she recalls. As time went on, these incidents increased. Natalie's mother thought the problems might be due to diet, and encouraged Natalie to eat well and take supplements; but to no avail. Finally, blood tests were done, but nothing abnormal showed up. "I began to wonder if this was all in my head," she says.
As the years rolled on, Natalie moved to Dublin, where she ended up happily working in the Savoy Cinema on O'Connell Street; she also fell in love with Lisa Higgins, and the pair, who live in separate homes, remain devoted.
But unfortunately, two years ago, Natalie's health began to deteriorate rapidly. "I started suffering from terrible car sickness," she recounts. "After long journeys, I would be absolutely shattered. I was also getting bad headaches, and spasms in my legs."
Things came to a head when Natalie collapsed during a visit to the cinema in Bantry. "I decided I was going to see a doctor as soon as I got back to Dublin," she says. "I wanted a scan of some sort; I knew something was seriously wrong." Natalie was advised to have a scan done privately, to avoid any delays in the public sector. "The doctor said I didn't have a brain tumour, and that was a relief. But then he told me that I had lesions in my brain and spine, and that could mean multiple sclerosis (MS). Lisa and I cried and cried. We hugged each other, and then she told me everything would be alright," Natalie remembers.
The next step was a lumbar puncture at Beaumont Hospital. Natalie had to lie in the foetal position while a needle was inserted. A small amount of cerebrospinal fluid was removed. This test can diagnose various conditions, including MS.
Finally, a consultant confirmed to Natalie that she had MS. When he asked her how she felt about the diagnosis, she said, "Well, it kind of sucks, but the question is, what do I do next?" Explaining her reaction, Natalie says, "I thought there was no point in me moping or getting upset about this; there were people out there much worse off than me. And while I knew there was no cure, I knew that one day there would be. I had heard there were new medications and some people were doing really well on them."
Natalie was put in touch with a specialist MS nurse, who explained the ins and outs of current treatments, and taught Natalie how to inject herself on a weekly basis. Natalie also learned that she could expect certain side effects from the medication, such as flu-like symptoms, which she was assured would lessen over time. But in Natalie's case, her MS symptoms persisted and the side-effects from the medication didn't lessen. "Five months later, I was no better," she explains. "At work, I could hardly stand. I'd lost coordination, and I had no balance." Then, one night Natalie and Lisa went to a pub with friends, and she fell apart. "I could barely stand," she recalls. "If someone saw me, they would have said I was really drunk, or off my head, but I hadn't even had a drink."
The couple took a taxi to Natalie's home. The only way she could get to her bed was to crawl up the stairs. The following morning, she couldn't even make it downstairs, and ended up back at Beaumont. "The doctor couldn't believe how bad I had got in just five months," Natalie recalls. "He had to admit me, and put me on steroids for two weeks." Natalie had to call in sick to work; that was in May 2014 and she hasn't been able to work since then.
The consultant advised Natalie that Lemtrada would be the preferred drug for her. However, as it was so expensive, funding would have to be sought from the cash-strapped HSE. In the meantime, Natalie was put on a different drug, and while that helped, just two months later, she was already relapsing. An MRI scan brought more bad news; the lesions had increased quite dramatically. Meanwhile, Natalie's headaches were becoming unbearable. "It felt like I had bubbles bursting in my head," she remembers. There were times she had to use a walking stick and, on other occasions, even a wheelchair. "I was getting desperate," she admits. "I'd tried two drugs, and both had failed."
So, she began campaigning to get funding for the treatment. She also made a formal complaint to the HSE and she wrote to every TD on the northside of the city, regardless of their political persuasion, asking them to help. And she prayed hard to Padre Pio. "I have great faith in him," she says.
It would seem that the few TDs who actually bothered to respond to Natalie's pleas sent identical generic responses - with one exception. Clare Daly, an Independent TD, took on the case with vigour. But even so, it wasn't looking good. So Natalie's friends were about to start fundraising when, out of the blue, Natalie got a call from Clare, to say that funding had finally been approved. It was like a dream come true.
The next six weeks were spent preparing for the first infusion of the drug, which was originally developed to treat cancers of the immune system; subsequently, it was found to be beneficial for certain patients with MS.
Natalie had her first infusion on June 17 this year, and the last one five days later, on her birthday. The results were incredible. "I don't feel sick," she volunteers enthusiastically. "I'm getting stronger. I have my balance back. I'm not scared all the time that I'm going to fall. Even the lesions are healing. It's like a miracle."
Right now, Natalie is really flying, and she plans to use her newfound energy to promote a new booklet, Access to Medicines, which was recently launched by Multiple Sclerosis Ireland. She will also be promoting the month-long MS Read-a-thon, which begins on October 9, and will see pupils in participating schools reading voraciously to raise funds for the society.
Finally, referring to the medication, she says, "If I could have gotten this from day one, I'd probably still be working."
Multiple Sclerosis Ireland, see ms-society.ie, or call the MS Information Line; tel: (1850) 233-233
MS Read-a-thon, see msreadathon.ie
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