Rare help is at hand... from group started locally
Having been diagnosed with an unusual lung disease, a Co Meath woman looked for help and found none locally. So, she tells Joy Orpen, she started her own support group and found a whole new world opening up
Published 25/08/2014 | 02:30
An enterprising mother of two, from Co Meath, who was diagnosed with a debilitating illness, discovered it was so rare that there wasn't even a local support group to help her deal with it. So she started her own group, which has now given her a whole new lease of life.
Emer Reilly-Corrigan (43) grew up in Dublin and worked in the accounts departments of various companies until she decided to change direction and take up employment in a preschool. She loved her new role and found her small charges were a great inspiration for her. "Children have no agenda and they take things as they see them," she says.
Then, about two years ago, she was doing a refresher course in first aid when, during the session, she got a pain in her side and began to feel terribly hot. It got so bad she had to go home. That evening, her symptoms continued to worsen; the pain got so intense that she couldn't find relief, no matter what she did.
"I thought it must be a cyst or a woman's thing," she says. Her GP suspected it might be kidney stones, and so he referred her to Our Lady of Lourdes Hospital in Drogheda. However, an increase in white blood cells indicated that Emer's body was fighting an infection, so she was put on antibiotics and kept in overnight. The next day an ultrasound was done and even though she was still on a trolley in A&E, she was too sick to care.
CT scans and X-rays revealed a very large tumour under her left kidney. "They were all so good at Drogheda hospital," she says. "One particular doctor, who was from Romania, was just amazing and so caring. He said he had never seen a growth like mine."
It was also noted that Emer tended to be short of breath, and that would need to be investigated.
So, a month after her discharge from hospital, she was seen by a respiratory specialist who diagnosed lymphangioleiomyomatosis (Lam). "He wrote the name out for me and told me it was a rare lung disease that only affects women," Emer recalls. "He said if it progresses to the next stage, it would mean a lung transplant. I was with my husband Jim at the time; it was a huge shock. We didn't say a word in the car when we went to get the boys. I was just too numb."
Like most people who get a difficult diagnosis, Emer turned to the internet. What she found there was frightening - and sometimes ill-informed. "Don't read personal accounts," she advises. "Go to the official websites for the support groups."
According to Lam Action - which is a UK-based organisation - the disease mainly affects the lungs, where abnormal cells appear. "This build-up of Lam cells occurs around the airways and also around the blood vessels and the lymph vessels [lymph vessels drain excess fluid from the lungs]. The Lam cells lead to cysts developing in the lung."
And while the main effects of Lam are in the lungs, around half of patients also develop tumours in the kidneys; these are not malignant but they can cause bleeding.
The main symptom of Lam is breathlessness, especially when the patient is active; it may also cause them to cough up sticky, white phlegm. Emer says the condition is oestrogen-driven and that her chief concern is her chest. "My lungs are full of cysts and when they burst, it is very painful," she says.
She, like many women with Lam, also has kidney problems.
"I'm on a special drug to shrink the kidney tumour. The long-term goal is to stabilise my lungs to stop the disease progressing. I go for lung-function and blood tests every three months. In two years, my lung function has decreased by 10pc," she says. Emer says her health issues are not obvious. "I get terribly tired, and yet people say I look great. You'd love to tell them that you'd been up all night with pain from the cysts and coughing up phlegm - some of the girls from the US [group] say they are going to have T-shirts printed with their CT scan results! You can also get side effects from the drug, such as high cholesterol, but they monitor you quite closely."
Having discovered that there was no support group for people living with Lam in Ireland, Emer decided she would start one herself.
Friends held a "girlie night" and managed to raise enough money to set up a website. While discussing its likely content with a woman in Italy who has Lam, it emerged that there was going to be a respiratory conference in Dublin.
The woman couldn't fly to Ireland, as she was unwell at that time, so Emer went in her place and as a consequence, her life began to change.
"There were all these specialists there and I had to get up and talk," Emer says. "It was nerve-racking. But I did meet people from the European Lung Federation (Elf) and they asked me to go to a conference in Munich."
When Emer went to another conference in Nottingham last year, she travelled by boat and had to change trains four times, as one of the doctors was worried she would get a collapsed lung if she flew. Since then, she has learnt that of 400 women in America with Lam who had travelled by plane, only nine ended up with a collapsed lung.
So now she is not scared to go by air to the conferences. Emer finds her interactions with other people who have Lam of great benefit. "If you're living with a rare disease, you can feel isolated," she says. "Some GPs don't know anything about Lam, so you really do need to get clued up yourself. You have to take responsibility for your own health."
Emer says diet is crucial in keeping her as well as possible. "I have a low-fat diet, with no mucous-making foods such as dairy products, and nothing with phyto-oestrogens [plant-based compounds that mimic oestrogen], like soya," she says. She also finds t'ai chi helpful, saying, "It's brilliant for relaxing me - with any chronic illness, you can become anxious."
And finally, she has succeeded in getting her Irish support network going.
"Currently there are six of us in the group, but there are probably other women in Ireland who have Lam and we'd like to hear from them," she says. "We members speak to each other in a closed group on Facebook, and that is very helpful. I want to raise awareness about Lam; women who get collapsed lungs should be tested for it. If I can give women out there the information they need, then I will feel I have done my bit."
Email: Emer Reilly-Corrigan at firstname.lastname@example.org