Author: Lisa Hyde-Barrett
Mesothelioma on International Rare Disease Day
Today is Rare Disease Day. This day is set aside as a worldwide event. The first international Rare Disease Day that included the United States was held in 2009. The theme this year is Patients and Researchers Partners for Life.
There are over 7,000 rare diseases recognized internationally, and approximately 90 percent still lack effective treatment. Eighty percent of them have identified genetic origins, and 75 percent of rare diseases affect children. Raising awareness that these conditions exist and that they affect people all over can shine a light on the need for further research.
In 1983, when Congress passed the Orphan Drug Act of 1983, rare diseases were called orphan diseases because drug companies were not interested in developing treatments for them. This bill created financial incentives to encourage the development of treatment and a definition of what a rare disease is. The definition of a rare disease in the United States is a condition that affects fewer than 200,000 people. The definition is different in Europe where a rare disease is a disease that affects 1 in 2,000 people.
Malignant mesothelioma is a rare disease. A rare disease with an active community and supporters. The progress that has been made towards a cure for mesothelioma has been made by research. Research is slow and expensive.
The Mesothelioma Applied Research Foundation has raised millions for research towards a cure. In addition the Foundation supports patients and families throughout their journey with mesothelioma. Awareness and advocacy, continued over time, is important to bring attention to a rare disease like malignant mesothelioma.
The overall goal of Rare Disease Day is to improve the knowledge of the general public on what is a rare disease. The National Organization of Rare Disease is raising awareness by encouraging people to light up buildings on February 28th. Their motto is “alone we are rare together we are strong.”
On Monday, February 28th, take a minute to learn about what challenges people with rare diseases face on a day to day basis. See the possibilities that a small community can accomplish when we all work together to a common goal.
A Necessary Discussion: End-of-Life Options for Mesothelioma Patients
The COVID-19 pandemic has been a frightening time for all of us. The uncertain nature of the disease and number of people affected brings the importance of what we want at the end of our lives to the forefront. With hospitals and skilled nursing facilities limiting visitors and the inability of some to travel, it is necessary to discuss what we wish to happen at the end of life with our loved ones.
We all know that when one person within our family or group of friends gets diagnosed with a severe illness like malignant mesothelioma, it affects all of us. Uncomfortable conversations need to be had. However, navigating these complex and potentially life-altering conversations can be done in a reflective, thoughtful way.
As nurses, we have long heard our peers state that they would never have chosen the treatment that a particular patient went with, only to confront a health challenge themselves and choose the same treatment option.
Our relationships are the most important connections that we have. What we value and who we love are all individual decisions. Once we self-reflect on what we value and how we would like to live our final days, we need to let others know. To ensure your wishes are carried out, they must be shared with those who care about us: a spouse, partners, friends, and so on. Your medical team needs to know your desires, but more important than anything is that you and your loved ones know them.
Having essential conversations regarding our end-of-life wishes should be done by all of us, ideally before a health crisis. But unfortunately, it is easy to put off these conversations.
There is guidance and help on where to start thinking and planning about our wishes. Ellen Goodman, one of the co-founders of the Conversation Project, sums up their goal: “Conversations about what matters to you, not what is the matter with you.”
There are workbooks to help clarify your values and wishes. What do you value? Do you want to be home when you die? With who will you share your wishes?
In this complex world, sometimes we need to get back to basics and accept that we all are mortal. Talking and planning will not hasten our end of life but enable some peace when it does come. Ensuring that what you as an individual value and the decisions you want are honored can offer some peace of mind for both you and your loved ones.
New Year is Time for Reflection for Mesothelioma Patients
Happy New Year!
As we welcome the beginning of 2022 and the end of 2021 we reflect on how time keeps marching on. The mesothelioma community continues to be a resilient, caring group. Dealing with a life threatening rare disease along with a pandemic is challenging for patients and loved ones.
Now that COVID-19 has been with us for almost two years, all of us are reminded about the importance of resilience and patience in taking care of ourselves and each other.
The New Year is a time of new beginnings and new promises, a fresh slate. With the New Year comes some continuing challenges such as the continued COVID-19 pandemic, the toll on the mesothelioma community, and the continued need for research for malignant mesothelioma.
We have all seen and experienced the emotional toll that the pandemic has on all of us – how with time we have become weary and afraid. For mesothelioma victims and families those feelings are compounded by being diagnosed with a serious cancer. We started to care for people diagnosed with malignant mesothelioma decades ago, and as we continue to actively care for patients and their families who are diagnosed with this cancer daily, we are amazed at the ability of the human spirit to deal with adversity.
As we welcome the new beginning a New Year offers we are grateful for the advancements of the past years. The year 2021 saw improved survival time for patients with non epithelioid mesothelioma by using a combination of immunotherapy agents ipilimumab and nivolumab, as first line treatment. This treatment has offered options to some patients who did not have many, and is just an example of the steps towards a cure that continue to go forward.
Progress does not come in a straight line. It can be elusive. The New Year offers a chance for thanks and gratitude for continued scientific progress and hope in 2022.
We wish you all a happy, peaceful, and healthy New Year as we go forward together to face the challenges ahead.
Expressing Gratitude as a Mesothelioma Patient
This time of year is ideally filled with family and friends getting together and creating memories.
For people that are facing health challenges like being diagnosed with malignant mesothelioma, the holidays can be a challenging time. When your world has been upended and you may not be at home for your usual festivities or you are not feeling the holiday mood, feeling grateful can be hard to do. Expressing gratitude may be even harder. Sometimes it is necessary to dig down deep within yourself to express thankfulness to those that are helping you.
During this time of year there is a lot of effort spent on getting the perfect present, the most thoughtful, the one thing that the person can really use for family and friends. For many of us this adds stress to what can already be a stressful time. Presents don’t have to be shiny and new and perfect, the gift of interacting and strengthening a bond in a relationship can be a much more meaningful present.
We all need to take some time out of this busy holiday season to express our gratitude to people that impact our lives. Many of us spend time and money shopping, decorating, baking – when for many a much more impactful thing would be to stop and thank someone for their kindness.
Telling someone that you are grateful for their support and presence in your journey can benefit both you and them. Acknowledge someone for listening to you when it would have been easier for them not to take the time.
By making a call, sending a note, text, or e-mail, or even giving a shout out on social media, you have acknowledged the kindness that has been shown. Recognition and acknowledgment can help improve and strengthen your relationships,
Research has shown that one of the benefits for the person expressing gratitude is greater happiness. Gratitude helps people relish good experiences, improve their health and improve their relationships.
This holiday season, slow down and acknowledge those that enrich our lives in a way that can’t be quantified, and so much more than a perfect present.
Happy Holidays!
Your Mesothelioma Diagnosis is the Start of a Journey
Being diagnosed with malignant mesothelioma will most likely change your perspective about life. The things you put emphasis on will no longer hold the same value. The relationships and everyday things you paid little or no attention to will now seem important. Our value system as you know it changes, our viewpoints will change without any conscious awareness.
Most likely you will learn more about yourself than you ever thought. You will begin to understand what makes you tick. When recovering from mesothelioma you will learn to understand your body. A whole new relationship will form. All of a sudden you will have certain hours of the day that you will perform better than others. There will be foods that give you energy, while others that once provided comfort will now be less appealing. You will learn the art of compensation and the art of acceptance.
You may not like the limits mesothelioma has placed on you but you will learn to figure it out. Some days will be very difficult while others will go by with more ease.
Having a rare disease like malignant mesothelioma is not easy on any level. Most medical professionals will paint the worst case scenario, and then the real experts of this disease will give you all scenarios. These will range from the very best to the very worst. Some of this will be up to you.
Of course, your disease is there. The type and the extent are facts. Taking a step back after the initial shock takes place may be the best thing you can do. Picking and choosing the things or situations that you are in charge of may be helpful.
Remember the things that made you smile yesterday are still there. Make a list of the things you can do while treating Mesothelioma. Pull every positive aspect you can and write it down. Being overwhelmed can interrupt your thought process. If you can only think of a couple of items that you are in charge of then just write them down. Keep the notepad handy.
Another thing you can do is think of the things you are grateful for. It is a difficult time to feel grateful but just make the list. When you are feeling not so well some day you can go back and reflect upon these ideas. Your mesothelioma journey will take you to a place where your life will change, you will meet people and you will learn to smile again with your loved ones and your new friends.
Free Mesothelioma Patient & Treatment Guide
We’d like to offer you our in-depth guide, “A Patient’s Guide to Mesothelioma,” absolutely free of charge.
It contains a wealth of information and resources to help you better understand the condition, choose (and afford) appropriate treatment, and exercise your legal right to compensation.
Download Now