Mackenzie’s Mission is focused on making a difference in the fight against amyloidosis. Three areas anchor our work - closing the educational gap in the medical community through the Amyloidosis Speakers Bureau (ASB); empowering patients and caregivers through our resource library and education hub; and supporting multiple world class institutions who conduct research and run clinical trials on amyloidosis.
Founded by Mackenzie Boedicker in 2017 following her diagnosis at age 23 with AL amyloidosis.
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My brother died because people didn’t communicate correctly.
Very important for us to know. Thank you!!
My ex died about 2 years ago after being diagnosed too late. They put her in hospice and 5 days later she was dead. She had many things wrong over the years ,morbidly obese ,diabetes ,blood clots over the years. When I saw the death cert,the amyloid as cause of death shocked me.
Thank you for the work you do.
How long does this disease take to make a difference in one’s life? I have had some type of mysterious problem for over 50 years and no doctors could figure it out! But just recently I had carpal tunnel surgery done and a skin sample was taken and it was biopsy and this junk showed up! I kind of believe this is what I have had for such a long period of time. I have had all kinds of test since this biopsy was taken with no results showing problems other than that sample. My heart is ok and all the other organs seem to be ok also through blood draws and urinate test. Now here is the kicker I’m 79 years old and well I don’t feel as though I want to be a guinea pig for experimental use. So what to do? My health seems to be good and I keep quite active for my age Jon
Hi Jon, amyloidosis can indeed be found in the tissue from carpal tunnel release surgery. The next step would be to connect with an amyloidosis center for further testing to confirm amyloidosis, determine the type you may have, and what (if any) organs are involved. After that, an appropriate treatment program can be considered. Suggest you visit www.amyloidosissupport.org to find a center near you. Significant advances have been made in this area, so you won't be a guinea pig - but getting to an expert is important. Two other good resources for information are www.arci.org and www.amyloidosis.org All the best.
My cholesterol was unusually high too, I was put on a statin, that I felt was killing me, like an allergic reaction, interesting. I was just diagnosed about a month ago, I had a kidney biopsy because of oedema. I was diagnosed about 8 months after I started feeling terrible, so far I don’t have myeloma, 30% of people can have both…I also had a bone marrow biopsy. I’m starting treatment this month.
I fought with doctors since late 2016 over why I, at the time a 43 year old athletic male, was being hospitalized for not being able to breath in my sleep. My oxygen was going so low at night and anytime I tried to sleep or even nap, my body would wake me up to take a deep breath. I felt like I was losing my mind from losing so much proper sleep and I did not (and, still do not) have obstructive apnea. My EKG displayed what they called "benign LAFB" EKG heart readings. They fought with me to say that all I had was anxiety and I needed to take the SSRI's and sleep drugs that they were trying to prescribe to me. I was prescribed oxygen for 3 liters/min at night for my oxygen falling to 83 in the night during my many sleep studies, but they said it must be due to some form of anxiety that I must have. I refused their drugs because I knew that they were way off on this diagnosis of theirs. My symptoms got worse and worse until, finally, in May of 2021 and after so many doctors's office and emergency room visits, I finally got to Mayo Clinic, where I was diagnosed with idiopathic right sided heart failure with preserved ejection fraction. My left side was good at the time, but even Mayo could not explain as to why only my right side was thickening for no known reason. At this present point of my seemingly unending nightmare experience, my heart is on the decline, and my current cardiologist hasn't sought an answer for a thing for me and appears to only be waiting for my heart to go out; no aggressive searching for any answers to my odd and purely nightmarish situation that I am living whatsoever. Now that I have recently discovered this amyloid condition, I have made an appointment with my cardiologist a couple months ago and I will be finally having my office visit with my cardiologist in a couple weeks from this post. I will be pushing for him to emergency test me for Amyloidosis. I can see that Amyloidosis is a true emergency and I hope that he at least does this much right when I present him with this discover by beginning the process of aggressively and quickly pursuing the testing for Amyloidosis. I am dearly appreciative of this video. Thank you and all these doctors in this video from the bottom of my heart. I am not sure at this point if I have this condition, but I am almost positive that this is what I have.
I also felt worse after being given a statin. Could the high cholesterol in the body keep the amyloid fibers lower?
I still watch this great video on occasion, with a lot of emotion.
Dr. Nativi-Nicolau's screen mentions asking the patient about carpal tunnel and back surgeries. Are back surgeries a clue to an amyloidosis diagnosis?
Like carpal tunnel syndrome, spinal stenosis is also suspected of offering early clues to amyloidosis.
Thank you for this! I was just diagnosed with Al and httr. This put me at ease
Everything my husband went through with this nightmare i will never forget.I remember it was Superbowl Sunday 2015 and he woke up and told me he was going to die. He didnt get diagnosed till April 2015. He was diagnosed with AL Amyloidosis. In Oct 2025 he had a pacemaker defib put in. But his heart was to far gone. He passed away in Feb 2016 . What yall do for awareness for this monster disease is amazing. Thank you
Martha Q Lacy Mayo, Rochester MN
I was suffered from Amyloidosis for a long time. Amyloidosis is a major hair loss problem. I used various medicines but did not get relief from this problem. One day one of my friends told me about Planet Ayurveda and their products. They provide AmyloidosisCare Pack for Amyloidosis. I used this pack. It was really very effective. If you have this problem use this pack.
My transplant is just around the corner, very nervous
Amyloidosis, is the serious disease of heart, kidneys, liver or other organs. My friend suffered from this disease. He used various medicines but got no relief. Then he used the Amyloidosis Care Pack of Planet Ayurveda and got relief from Amyloidosis.
If you had no organ involvement how did they find your Amyloidosis?
This is such a beautiful tribute to those who have fought a battle and lost and to those who are fighting the battle. R.I.P. My love Patrick
Very thorough Mackenzie, thank you for sharing all of the highlights and lowlights of this awful disease. Best wishes in your adventure into Med School. I'm 44, learned I had Amy in my liver at 38 and they thought I was too young so I can't imagine their surprise to see you had it. My daughter is 22 and working toward med school herself and her biggest fear is all of this hard work and finding out she's inherited it from me. I'm happy to hear you are on the road to recovery and feeling better so you can concentrate on your studies and still sharing your experience with us along the way. I have no doubt you can and will be a very compassionate Dr when your day comes. 💓
Your story is very interesting and special. Congratulations for your courage and the great fight against the disease. I am happy that you have a complete remission and you are doing well. Good luck in your study on becoming a doctor. I am also an AL amyloidosis patient diagnosed in April 2011 at the age of 59, with one organ involved, the liver. My principal symptom was jaundice and it is rare. Like you, I had an ASCT in February 2012 after 8 months of chemo (velcade plus dex). I am in complete remission. My name is Gaétan Chevalier and I live in Québec city, Canada. Thank you very much for raising awareness.
Thanks for the vid. You’re awesome. We’ve been following and rooting for you!!! Glad to be on the channel.