Self-management I guess I’m an expert on patient issues by experience. I’ve had a chronic condition for nearly 60 years and would consider myself a self-managing patient rather than a passive recipient of care, actively trying to control my condition. I consider all the options available in the NHS and worldwide, not only the usual treatment route but also how complementary medicine can help my condition as well as taking different approaches to...

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Eva is a Slovenian young lady who, 4 years ago, has been diagnosed with type 1 diabetes. Along with sharing her experience with diabetes, the challenges of not being able to enjoy the latest technologies, she explains her involvement in local public health campaigns especially with children to dispel the myths around diabetes and ensure a better knowledge of this condition. 1. What medical devices are relevant to your disease area? For measuring blood glucose level: blood glucose metres, lancets, test strips, continuous blood glucose monitors (sensors). For the delivery of insulin: smart pens, needles, insulin pumps. 2. Have you seen any developments in recent years in the treatment of the disease, which were helpful to you? I have been diagnosed with type 1 diabetes for 4 years. During this time, a lot of new blood glucose metres have become available, that are more precise, work faster, and require less blood for measurement. There are also regular improvements in insulin pump technology, such as the ‘closed-loop’ system, which prevent some hypoglycaemic events. Sadly, none of these improvements were helpful to me, because our insurance company only covers the fee for a new insulin pump after 8 years of use. In the end it can be quite frustrating to hear about new technology in the media or from other sources and not be able to afford it as soon as it is launched to the market. 3. What initiatives to educate people about the disease have you been involved in or seen, which you think might be interesting for other countries to learn from? I have been involved in many public health campaigns with the topic of diabetes and healthy lifestyle. In my opinion the most interesting initiative in Slovenia is the annual competition in on your knowledge of diabetes, which...
BVMED, the German national medical devices association, has initiated a campaign to raise awareness about medical devices and empowering patients to be body proud, despite having a medical device. We have translated extracts of Peter’s story as part of European MedTech Week. To view all the stories, click here . Why are you supporting the “Body pride” campaign? To begin with, I had to think it over thoroughly. I thought: once thousands of people see you on a poster with your backpack, they will become pretty used to it. I also wanted to reassure others; show them that you can live well with such an illness and cope with your everyday life. What do you suffer from? Since birth, my intestines haven’t worked as they do in healthy people. They only absorb small quantities of nutrients. This malfunction leads to further extreme complications. I no longer have a large intestine. It was surgically removed when I was barely a year old. When was your illness diagnosed? As a baby, my mother was still nursing me and everything was fine. However, things took a turn for the worse once I should have been taking solid food. I would often vomit and had stomach pains. That is why I was often hospitalised. I underwent surgery repeatedly because the doctors could not really establish what was wrong with me. At first, they thought that it was due to an intestinal obstruction, which was not the case. Since when have you been receiving parenteral nutrition? For a long time they tried to feed me naturally. However, when I was three years old, only parenteral nutrition could improve my general condition. And it worked: artificial nutrition made me better again. I need this to feed me nutrients and to compensate for my loss of fluids...
Almost one-third of California women with ovarian cancer survive at least 10 years after diagnosis. The findings upend the notion that women diagnosed with cancer of the ovary always face a poor chance of survival. In fact, while the study confirmed earlier findings on characteristics associated with ovarian cancer survival—younger age, earlier stage, and lower grade tumors at diagnosis—it also identified a surprising number of long-term survivors who didn’t meet those criteria. “The perception that almost all women will die of this disease is not correct,” says Rosemary Cress, an epidemiologist and associate adjunct professor at University of California, Davis and lead author of a new paper published online in the journal Obstetrics and Gynecology . “This information will be helpful to physicians who first diagnose these patients and the obstetricians/gynecologists who take care of them after they receive treatment from specialists.” LONG-TERM SURVIVORS For the study, researchers used the California Cancer Registry to analyze data reported on all California residents diagnosed with epithelial ovarian cancer between 1994 and 2001. Epithelial ovarian cancer is the most common type of ovarian cancer, occurring in nine out of 10 cases. Of the 11,541 patients in the registry database, 3,582 (31 percent) survived more than 10 years. This was the first time that research has looked at 10-year trajectories for patients; most survival studies have looked only at 5-year survival or less. As expected, the study shows that the majority of the long-term survivors were younger, had early-stage disease when they were diagnosed, and their tumors were of a lower-risk tissue type. But what struck the researchers was that of the 3,582 long-term survivors, 954 of them had been considered to be at high risk of dying from their disease, either because of their tumor stage, grade, or older age at diagnosis. ONE...
1. What medical devices are relevant to your disease area? For people with diabetes, blood glucose meters are essential to managing the disease well. Beyond that, people use either insulin pens or insulin pumps, and some also use devices that measure the blood glucose on a more continuous basis, so called continuous glucose monitors (CGM) or flash glucose monitors (FGM). 2. Have you seen any developments in recent years in the treatment of the disease, which were helpful to you? Yes, the CGM! I’ve been using a CGM since 2012 and that has made a huge difference in my life! It helps me control my blood sugar better and is especially helpful when it comes to dealing with low blood sugars (hypos). I have mild hypoglycemic unawareness, which means I have a hard time noticing when my levels are too low, but the CGM sets off an alarm and suspends insulin delivery to help raise the blood sugar. That has been very helpful for me, especially at nighttime! My new GCM even predicts when a hypo is coming and tries to prevent it. 3. What initiatives to educate people about the disease have you been involved in or seen, which you think might be interesting for other countries to learn from? I think using social media to educate people is very efficient. The organization I am part of, Ung Diabetes, (youth organization of the Swedish Diabetes Association) recently had an Instagram campaign where we let a new person do a guest take-over of our account for a week each. They posted pictures of their everyday life with diabetes to show people what their experience of living with diabetes is like. The aim was to show that diabetes is an individual disease that different people experience differently, and to increase people’s...
1. What medical devices are relevant to your disease area? There are a number of medical devices that are important for patients with incontinence conditions. Bladder installations for interstitial cystitis, neuromodulation devices help patients to address pain symptoms and catheters, are examples of the devices used. 2. Have you seen any developments in recent years in the treatment of the disease, which were helpful to you? New innovative bladder installations have been very beneficial for patients. These novel devices contain chondroitin sulphate and /or hyaluronic acid. Such devices are far less invasive than other bladder installations and provide a much better quality-of-life for patients. 3. What initiatives to educate people about the disease have you been involved in or seen, which you think might be interesting for other countries to learn from? I’m involved in quite a few things and have seen some good examples of patient advocacy. ● Public relations and communications: Within our national association, we have set up a public relations group which is flourishing. They have been working successful on getting media coverage and are active on social media, an important forum to communicate with patients and inform. The group also developed very helpful patient-friendly leaflets. ● Promoting the patient voice at scientific congresses: We have a multinational organization, which aims to raise awareness and involves with around 8 European countries. The German group are particularly active and are doing a great job. Moreover, we work with other international organizations such as the International Pelvic Pain Partnership which involves 12 countries with many patient-led activities, and at the Abdominal Pelvic and Pain Conference the World Federation for Incontinent Patients creates promotional activities and organizes both a Patient Day and is actively involved in the plenary session at this conference, which is attended by urologists and urogynaecologists...
Self-management I guess I’m an expert on patient issues by experience. I’ve had a chronic condition for nearly 60 years and would consider myself a self-managing patient rather than a passive recipient of care, actively trying to control my condition. I consider all the options available in the NHS and worldwide, not only the usual treatment route but also how complementary medicine can help my condition as well as taking different approaches to my diet and exercise. I feel more empowered, happier and healthier when I’m in control of my health and I’m managing my condition. Some patients are looking for that magic bullet, going to their doctor to get medicine, get treated and trying to get on with their life. But for me and other patients with multiple chronic diseases, actively monitoring my health is crucial. My MedTech I have a few devices to hand when I need them. I am at home right now and wearing an alarm alert device around my neck. This is just a precaution should there be a problem and my wife is not around to help. I have a stairlift fitted in my home to help me get upstairs and I use a powered wheelchair which is essential for my condition. I travel regularly as a patient advocate, particularly to Brussels and in this case I use a standard wheelchair. I go occasionally to the doctor or the hospital for a blood test or an x-ray and to get my blood pressure checked, all of which are part of medtech. Rheumatology There have been a lot of biological treatments in the rheumatology field and for those who are treated early, they can be revolutionary. These treatments are extremely expensive however, and won’t make much difference to me at this stage of my condition...