Mesothelioma Help Cancer News
Prayers and a Listener Are Priceless Support For Mesothelioma Victims
When someone you care for is diagnosed with mesothelioma, you might wonder what you can do to help. The first answer is, of course, PRAY and ask others to pray as well. Never, ever underestimate the power of prayer. Our family and our story is proof of that. You might feel as though there is nothing else you can do, but the truth is that you can.
The family that is going through a mesothelioma diagnosis and treatment is scared, tired, and exhausted in every capacity. Any help that you can offer is important. If you know that the person with the diagnosis usually does a certain task, ask if you could take that job over for a while. For example, Dad always spends a lot of time cutting grass, so family members took care of that for him. If you always see someone at the grocery store, ask if they will give you their list and pick up the items for them.
One thing that was extremely helpful was people helping to take care of my two grandmothers who my parents looked after. In this case, if you are a family member, or are close to the family, offer to help take on some, or more of, the responsibility in that regard.
Take a healthy meal over to the family. Trust me, they are too tired to cook and might forget to eat all together. Nutrition is so important for any cancer patient, and helping them eat, and eat right, is a great help.
Lastly, a shoulder to cry on and a listening ear are priceless. Spending time with the people impacted by a mesothelioma diagnosis is so meaningful and kind. Let them know that you are praying for them, that you support them, and that you are there for them whatever they may need at any time. The visits we received throughout our journey were so precious to us. Knowing that you are not going through it alone is a priceless thing.
Keep in mind that any kind of help you can give or offer is appreciated whether those involved are able to express it or not. Remember that they are going through a very difficult time. When offering your help, try hard not to overwhelm them, as they are already feeling devastated, so be sensitive to their situation. Friends and family members are an important factor in helping someone recovering from mesothelioma, so you are a cherished member of the team!
Thoracic Nurse to Provide Mesothelioma Information to Readers of MesotheliomaHelp
Lisa Hyde-Barrett has been a thoracic surgery nurse for nearly 25 years, and has had the privilege of caring for countless mesothelioma patients over the years. Lisa has worked alongside some of the leading authorities on treating mesothelioma at Brigham and Women’s Hospital through the International Mesothelioma Program (IMP).
Lisa is also a wellness advocate and she understands the relationship between awareness and cancer prevention and spends much of her time educating patients and their families about the importance of living a healthy lifestyle. She also knows that mesothelioma is one disease that can only be prevented through avoidance of asbestos, and once it develops it is challenging to treat.
Lisa feels very passionate about focusing her career on caring for mesothelioma patients and helping them deal with the disease. “I think that these people are the bravest people I have ever met,” says Lisa.
She adds that many of the patients that are treated at the IMP come such long distances, some coming from as far away as Europe and Asia, and they have no idea how their fortune is going to turn out. “These people have been given the worst of the worst news, yet still they find hope and courage,” said Lisa.
Lisa also works with Nursing Liaisons. Nursing Liaisons was founded on the premise that highly skilled and educated thoracic nurses recognize the need for a precise “aftercare” program. The nurses not only offer medical care to patients, but they also help to educate patients synchronizing their diagnosis with each unique, individual journey of mesothelioma. The nurses hope to educate patients transitioning to a more meaningful understanding of treatment and prognosis.
Lisa has been called upon to share her knowledge of mesothelioma at various conferences and educational seminars. In September, she co-presented a session at the 11th International Conference of the International Mesothelioma Interest Group entitled, “The Complex Discharge Needs of the Mesothelioma Patient.” She and her colleagues discussed the potential barriers mesothelioma patients and their families may encounter that could impede learning how to care for the patient and how nurses can offer support to help overcome those obstacles.
She is certified in Guided Care which was presented from Johns Hopkins Hospital. Also, Lisa recently has been certified in Reiki, a Japanese “laying on hands” technique for stress reduction and relaxation that promotes healing.
“I continue to meet people fighting this disease, and I am always asking how I can make a difference and help them through this journey,” says Lisa.
Please join us in welcoming Lisa to MesotheliomaHelp where she will offer articles focused on the needs of mesothelioma patients.
Funds from EU to Aid Rare Disease Consortium in Battling Mesothelioma
In 2011, the U.S. National Institutes of Health and the European Commission joined forces to form the International Rare Disease Research Consortium (IRDiRC) with a goal to develop 200 new rare disease treatments by 2020. To support this effort, the EU announced last week it is dedicating nearly 38 million Euro, or more than $51 million, in funding towards “the development of a central global rare disease hub involving 70 institutions that will allow scientists to share data from their genomics research projects.” Rare diseases, such as mesothelioma, globally affect nearly one person in 17.
According to a press release by Newcastle University which is coordinating the new rare disease hub, the collaborative efforts will lead to “faster diagnosis” and better treatments that will improve the quality of life for rare disease sufferers.
In the United States, an orphan disease status is assigned to a disease or disorder if it affects fewer than 200,000 Americans at any given time. Mesothelioma, a cancer caused by asbestos exposure, is diagnosed in 3,000 Americans each year. There are nearly 7,000 rare diseases that affect one in ten Americans. Close to 30 million people across Europe are affected by a rare disease.
Many physicians and scientists believe that the answer to finding an effective treatment for mesothelioma and other rare diseases lies within each patient’s genetic makeup. Recent advances in genome sequencing have brought the cost down and have accelerated genetic discovery leading to targeted drug development and personalized care.
“Being able to sequence a person’s entire genetic code is an important advance, particularly for people living with the many rare genetic disorders, but it has also shown us that sequencing is only the first part of the story,” said Professor Hanns Lochmüller of Newcastle University and leader of the project. “It doesn’t replace clinical expertise – in fact, being able to combine genetic data with clinical data is more important than ever.”
The IRDiRC is launching several major projects combining international genetic data with clinical information and data on biomaterials “to help interpret the vast amounts of data the genome yields,” said Professor Paul Lasko of McGill University in Montréal, Canada, Chair-Elect of the IRDiRC Executive Committee. “This will aid scientists in the search for genetic causes of diseases and help identify new ways to create targeted therapies.”
According to Newcastle University, the projects include developing a global infrastructure to share the research of rare disease projects and supporting international rare disease collaboration through IRDiRC.
The IRDiRC Conference 2013 will be held in Dublin, Ireland on April 16-17, 2013. Sessions will focus on fostering international collaboration in rare diseases research. In addition, attendees will discuss which tools are needed and which are under development that can be used towards reaching IRDiRC objectives.
Student of Optometry Places Third in Mesothelioma Essay Scholarship Contest, Encourages Mesothelioma Patients to Maintain a Positive Attitude
Kim Forgione completed a degree at the University of Montana in wildlife biology, and was anxious to continue her education. However, as she looked to earning a doctorate in optometry she knew that finding ways to help pay for her education would be critical in allowing her to focus on her goal. Fortunately, Kim entered the mesothelioma essay scholarship contest sponsored by MesotheliomaHelp.org and placed third for her essay, “Latest Developments in Mesothelioma Treatment Options,” winning $1,250 to apply towards her PhD program.
“I never take for granted people and organizations that are generous enough to help me in reaching my academic goals,” said Kim after learning of her prize. “The scholarship will help me in meeting the financial challenges of attending optometry school, and it strengthens my obligation to always do my best and live up to my full potential.”
Kim’s essay focused on new developments for the treatment of mesothelioma, an asbestos-caused cancer, such as tomotherapy, an advanced form of radiotherapy, immunotherapy and gene therapy. She concludes saying, “The future of mesothelioma treatment options is hopeful, and new findings can only build upon our current knowledge in revolutionary ways.”
Although Kim had heard of mesothelioma prior to writing her essay, she said, “I am privileged for having the opportunity to engage in a scholarship contest that allowed me to learn so much about such an important topic.” She added that she would tell mesothelioma patients, “to maintain a positive and hopeful attitude.” Treatment options have come a long way over the past few years, she said, and she believes they can only become more advanced in the years to come.
The winning essay writers had a second chance to win an Apple iPad Mini by garnering the most “likes” on MesotheliomaHelp.org’s Facebook page for their winning essays. Kim received a total of 460 votes to win the iPad.
“The iPad will allow me to have numerous optometry-related applications at my finger tips. It will also serve as a convenient means to transport notes, textbooks, and other references to class.”
Kim said she was “honored” to be chosen as one of the winners. Now she will help raise awareness of mesothelioma by directing people to MesotheliomaHelp.org and other appropriate mesothelioma resources.
You can read Kim’s winning essay here.
Mother’s Diagnosis Reminds of Danger of Environmental Exposure to Asbestos
A mother of three children said her terminal cancer was caused by exposure to asbestos on the playground when she was a child. Asbestos causes cancer in humans including lung cancer and mesothelioma, a cancer of the lining of the lungs.
Penny Garner, 45, who lives in Manchester, England, was diagnosed with lung cancer caused by asbestos 18 months ago after suffering chest pains and initially being misdiagnosed with a pulled chest muscle and then pneumonia. According to the Manchester Evening News, Garner’s doctors eventually identified the cancer and asked her when she had worked with asbestos.
She recalled in a newspaper article spending playtimes while a primary school student in the 1970s watching builders demolish the historic Seedley baths next to the school, after asbestos was discovered in them. Garner said it was terrifying that she could develop a serious disease from playing in the school yard.
Garner said while her condition is stable at present, she has been told that her illness is terminal and is living in limbo between the tests she has to have every two months. The former seamstress said she tried to carry on a normal routine as much as possible for her children, but is very difficult.
Penny Garner’s tragic story underscores the fact that people may develop mesothelioma and lung cancer as a result of exposure to asbestos fibers in the surrounding environment. And while most people diagnosed with asbestos disease are older workers and veterans, young people also may develop the disease.
Workplace exposure to asbestos is more common than environmental exposure. But families of asbestos workers and people exposed to asbestos in the environment are susceptible to mesothelioma and asbestos disease.
According to the National Cancer Institute, while it’s clear that health risks from asbestos exposure increase with longer duration of exposure, researchers have found asbestos-related diseases in individuals with only brief exposure to asbestos. Asbestos disease has a long latency period of 20 years to 40 years before cancer symptoms appear.
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