“A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.” – raredisease.org Rare Disease Day takes place every year on the last day of February. The purpose is to raise awareness about rare diseases and their impact on patient’s lives. Most rare disorders have no cure, and many go undiagnosed. Raising awareness can encourage researchers and decision makers to address the needs of those living with rare diseases….
I have been living with AL Amyloidosis for almost three years now. My free light ratio continues to be normal! “I don’t expect your levels to increase anytime soon, and if they do, we’ll just zap them down again. For someone like you who has had a good response to treatment, and who’s organs continue to improve, your life expectancy is pretty much back to normal now.” Wonderful words of comfort from my hematologist. My kidneys continue to improve. My…
My final chemotherapy treatment was very anti climatic. I didn’t ring a bell, pronounce I had won, and skip merrily from the hospital . I left quietly, just like any other day. I was incredibly happy to be done with blood work, injections, and infusions. I was overwhelmingly grateful for my healing. But I was also scared. Scared that once active treatment ended my disease would come raging back in full force.(Not exactly how it works, but tell that to…
My disease has taken from my children. It took me away for almost a year of their lives. As I battled my illness I was not able to be a main caregiver for them. There were many things I missed out on. Time was taken from us. It has caused them stress. It has made them worry. It has made them sad. The negative impacts are obvious. But what about the ways it can positively affect them? I set an…
Winter blues got you down? I feel you. I don’t like to be cold. But I live in Canada so it’s kind of inevitable. It happens every winter. At some point I just feel blah. It becomes a little harder to wrap my head around my illness and to focus on all the wonderful things I’m grateful for. So I did what comes naturally to me when faced with a problem….I read. I read and learn about whatever issue I’m…
Mackenzie was diagnosed with Amyloidosis when she was only 23 years old. After receiving an autologous stem cell transplant at the Mayo Clinic in Rochester, MN she is now in complete remission! Mackenzie’s Mission was founded to help spread awareness of this disease and to raise funds for research. In 2018, the first ever Play FORE the Cure golf tournament, plus donations throughout the year, raised over $164,000! Through their website, Facebook page, and YouTube channel, Mackenzie’s Mission continues to create…
Parenting is hard. When you’re chronically ill it throws even more complications into the mix. I recently spoke with some chronic moms about what it’s like to parent when you’re sick. The consensus: It’s tough! But….think about all the good you can teach your child. You have a unique perspective and can be a real life role model. You can teach them how to overcome! How to be resilient, how to make the best of what life throws at them….
Thank you so much to Mackenzie’s Mission for putting together this Faces of Amyloidosis video and for including me in it. Spreading awareness of this rare disease is crucial. It leads to earlier diagnosis which leads to saving lives. Once thought to be the disease of elderly men, a diagnosis of Amyloidosis is becoming more prevalent in younger men and women. Doctors need to recognize this and test if symptoms are present even if the patient does not fit the…
Over the past few weeks I have had people reach out to me who have either just received a diagnosis of Amyloidosis, or who are in the process of being tested. Each of these people has expressed that they hesitated to contact me. Please don’t hesitate to contact me! My main reason for starting this blog and sharing my story was to help others like me. People who were sick and scared and searching for answers. Navigating a rare disease…
I must say I was completely shocked when I heard of the end of the trial for NEO. Others I have talked to (people definitely more knowledgeable than I in the field of amyloids) had a feeling it was coming. I was convinced that this antibody was going to do wonders for the field of AL Amyloidosis. I was convinced that it was doing wonders for me! (I feel like maybe it did still help me even if they didn’t…