Page 13 - RetailPharmacyAssistants-March2021-Updated

Tell us about your background and how you came to co- found Endometriosis Australia. I was diagnosed with endometriosis when I was 31. I’d been living with the condition, really unbeknownst to me, since I was 16. The catalyst \\\\\\\[for co-founding Endometriosis Australia\\\\\\\] was that ... even though the seed had been planted with my own journey with endometriosis ... I didn’t want the next generation of people to go unaware. \\\\\\\[People\\\\\\\] with endometriosis who are living in silence, they needed to have a voice. I do have a couple of unusual presentations with endometriosis. I have diaphragmatic endometriosis with adhesions to the pericardium, and I’ve also had a liver resection due to endometriosis. So, a quite advanced disease. But I suppose the nature of my symptoms aren’t equivalent to the extent of my disease. While I still have a lot of symptoms ... I’m able to function. Endometriosis Australia has become like the second baby. I could only have one child, due to endometriosis. So Endometriosis Australia has been the other passion in my life, besides my family. Tell us more about Endometriosis Australia, its aim, purpose and goals. Endometriosis Australia is very dedicated to our mission, which is about raising awareness, increasing the education, and about funding research. So, we know research is the key ... Unless we have the research, we can’t find those answers. And we can’t figure out this puzzle that is endometriosis. I mean, the disease affects every part of a person’s life: physically, mentally, emotionally. You’re trying to get your work and life in balance. Your friendships, your family – there isn’t a part of your life that this disease doesn’t touch. So, our mission is those three pillars: awareness, education and funding research. What research is currently underway in this space? There’s a lot of research going on. There are the big research studies with the MRFF \\\\\\\[Medical Research Future Fund\\\\\\\] grant and they were announced last year \\\\\\\[2020\\\\\\\]. We’ve got some digital research, too, for information. Then we’ve got new research that Endometriosis Australia’s grant program has been able to fund, and that’s in a variety of areas. We need serious investments, because we have the researchers; they just need the support with that investment in funding. How does Endometriosis Australia assist women with the condition? By educating people who live with endometriosis. I often say that by educating everyone, or educating ‘endo warriors’, and the family, and their workplace ... we’re empowering those patients to be the CEO of their healthcare. So, giving them those tools is what can directly help patients. We empower them with the education of knowing there are healthcare professionals and skill-based practitioners available to look after endometriosis patients. We encourage them to seek advice on their medications through pharmacies, and also to look at other things, like allied health, pelvic physiotherapy, mental health services, like counselling and psychology. Then you’ve got nutrition and exercise. We do know there are research projects looking into yoga and its benefits for endometriosis. So, educating them to build their village – you know, we have to have a community to raise a child, we have to have the community to support and help treat endometriosis patients. How many women does this condition affect in Australia? The newest stats from the women’s longitudinal study, is one in nine women will be diagnosed with endometriosis at some point in their life. So, 11.4 per cent, and that equates to a little over 830,000. There’s a great, interactive map on our site that shows the breakdown per state as well. What are the common symptoms of endometriosis? The issue with the symptoms is that I think we normalise them, because we’re always told periods are supposed to be painful, and they’re not meant to be painful as much as they may be uncomfortable. But if people have to miss work, university, social interactions, then there’s something going on. And it might not always be endometriosis, but it is not normal. Endometriosis, we know, has a hereditary element to it – AWARENESS SPOTLIGHT 11 you’re eight times more likely to have it if a family member has endometriosis. So, if it runs in your family, they might just call it ‘a family curse’ and say, ‘Oh, everyone in our family has that’. So, the symptoms may appear vague, but living them isn’t vague. They include fatigue – you’re always tired because you’re always fighting pain. There’s fatigue, there’s pain on defecation, urination, intercourse. It may be pain around your periods. It might be pain around ovulation. There are quite a few different things. Some people get really bad nausea. Some people faint every time they get a period. Sometimes people have really aggressive disease, and it gets to a point where they’re in pain every day. It could be stage one disease \\\\\\\[of four disease stages\\\\\\\]. It might be that someone has stage four, like me, and is still able to function. Others might have stage one and be bedridden. Severity of pain is not a reflection of severity of disease. How is endometriosis normally diagnosed? I think the gold standard is still classed as surgery. When they do excision surgery, they can cut the lesions out and send them off to pathology. So that’s the clear, defined way of diagnosing endometriosis. But there can also be a clinical diagnosis. If your doctor suspects endometriosis – and that’s usually, because you’re being referred to someone who has an interest in endometriosis – they can also look at ultrasounds, imaging and MRI ... those images can play a big role in determining or giving an idea of whether there’s something more to investigate. How is this condition typically managed? It’s about finding whatever works for you. What works for one person isn’t going to work for every person. Some people can tolerate hormones, while others cannot. Some people can tolerate pain medication, while others cannot. It’s just a whole host of different things. I can’t overemphasise the benefits of pelvic physiotherapy. It’s a really great tool. Those muscles have been spasming for such a long time. It’s a great tool to help relax or calm the muscles down, because they’ve been in that ‘fight or flight’ kind of mode for such a long time. TO PAGE 12 RETAIL PHARMACY ASSISTANTS • MAR 2021