Kia Ora friends,
My name is Aubrey and from the website’s ‘About Us‘ page, you would have formed some background on who I am and what I have been through with this disease. The photograph you see is of me on a good day when the pain is around the ‘6’ mark on a scale of 1 to 10 (this being the worst) where my stomach is not acting up too much and my blood pressure is manageable. Also, my body is not trying to deal with an episode of hypoglycemia or low sugar drop.
The reason I am writing this is to let all of you amazing people that have Amyloidosis know that no matter which type or strain you have, letting others know what it is like to experience this disease is so vitally important for the future of treatment. Our community needs to know that ANYONE can get Amyloidosis and although it is a rare form (not necessarily because very few people have it but more so since not many people are diagnosed with it due to lack of awareness and thus our condition does not get talked about), it is not unique in that only certain types of people can get it. ANYONE is susceptible to getting the disease. Factors that increase your risk include:
- Age. Most people diagnosed with AL amyloidosis, the most common type, are between ages 60 and 70, although earlier onset occurs.
- Sex. Nearly 70 percent of people with AL amyloidosis are men.
- Other diseases. Having a chronic infectious or inflammatory disease increases your risk of AA amyloidosis.
- Family history. Some types of amyloidosis are hereditary.
- Kidney dialysis. Dialysis can’t always remove large proteins from the blood. If you’re on dialysis, abnormal proteins can build up in your blood and eventually be deposited in tissue. This condition is less common with modern dialysis techniques.
- Race. People of African descent appear to be at higher risk of carrying a genetic mutation associated with the type of amyloidosis that can harm the heart.
(Courtesy of Mayo Clinic)
At NZAPA we want to spread the word about this disease in New Zealand and possibly to our neighbouring countries. We want to build a good awareness of Amyloidosis so that when someone displaying symptoms go to their doctor early on, that doctor is in the know-how of what to do and where to get treatment for his/her patient. We also want to cease having to repeat explain our condition everytime we see a new nurse or doctor because it can be so exhausting, even to those amongst our circle of family and friends. Last but not least, we want treatment drugs to be available locally for patients. Anything from Daratumab for AL to aTTR stabilizers like diflunisal, tafamidis and AG10 or the more effective gene silencers like Inotersen and Patisiran. Not only available but also funded.
But for these to happen, we must all be proactive about making our voices heard and joining forces to support one another. It is amazing the amount of positive change we can achieve when we band together. You are not alone in this anymore like how I felt when I first found out I had it.
We will be having our first Amyloidosis patient and carer workshop this April. It has taken a very long time for this to eventuate and I really hope that I can meet as many patients as possible on that afternoon.
There are good days and not so good days for me. In the good days, I rejoice and in the “not so good days” well, I also rejoice. The former because I have less pain to contend with and the latter, because I know that my suffering is making a difference to others out there. To attend, just click on this registration link. The time is certainly now to start impacting a shift in treatment of this disease.