Knowing where to go for information when diagnosed with Amyloidosis is key. This is a difficult disease from a diagnosis standpoint, and getting it right is critical so as to set forth a customized treatment plan for your unique situation. We have also learned from our own experience that being informed is critical so that you and your caregivers can become strong advocates when collaborating with the medical professionals. Being a rare disease, we have found a warm embrace from those that have traveled before us who are more than willing to offer their support and guidance. Take that on, and pay it forward to help those coming after you. We at Mackenzie’s Mission believe that creating a stronger community voice brings heightened awareness, action, answers, and solutions. Do not rely on searching the internet, as it is not a productive way to source information.
While in no way a complete list, it is one we ourselves have found helpful. We hope this helps you and your caregivers on your journey and we welcome suggestions regarding additional outstanding organizations that we should consider adding. Please note, Mackenzie’s Mission offers these resources below for informational purposes only, with the goal of educating and empowering patients and caregivers. We encourage you to consult your medical professionals before choosing a treatment plan.
Fight on!
Amyloidosis Clinical Resources App for healthcare professionals – Developed and maintained by the Amyloidosis Research Consortium, this app is free and available for download from the App Store and GooglePlay. Amyloidosis patients are encouraged to tell their medical teams about the new app and to advocate for all healthcare professionals to download and use this extensive resource.
Amyloidosis Research Consortium
Amyloidosis Support Groups (website)
Amyloidosis Support Groups (Facebook groups; there are numerous so look around)
Be The Match – National Marrow Donor Program
Bone Marrow Transplant – Mayo Clinic Radio
Boston University: A Center of Excellence for Amyloidosis
Canadian Organization for Rare Disorders (CORD)
Cardiac Amyloidosis – Martha Grogan, MD, Cardiologist at the Mayo Clinic
Education for Healthcare Professionals – Amyloidosis Research Consortium
Genetic and Rare Diseases Information Center (GARD); Funded by the NIH (National Institutes for Health)
Genetic and Rare Diseases Information Center (GARD) – AL Amyloidosis (Note, their website has links to dozens of other types of Amyloidosis, offering excellent detailed information.)
ATTRv/hATTR Education and Resources (hATTR Bridge) – Alnylam Pharmaceuticals
ATTRv/hATTR Patient Resources (including Compass Program/Genetic Testing) – Akcea Therapeutics
ATTRv/hATTR/wtATTR Patient Resources (VyndaLink) – Pfizer
Heart Failure / ATTR Cardiomyopathy (ATTR-CM) – patient resources
Mayo Clinic: A Center of Excellence for Amyloidosis
My Amyloidosis Pathfinder (MAP) – Provides help finding clinical trials and treatment centers best suited for you.
mSMART – Our mission is to present the state of the art approach to management of plasma cells disorders including Myeloma, Amyloidosis, and Waldenstrom’s Macroglobulinemia. Views expressed here are opinions of a group of experts from the Mayo Clinic, based on best available evidence.
National Amyloidosis Centre (NAC) – UK
National Organization for Rare Disorders (NORD)
Patient Advocate Foundation – Solving insurance and healthcare access issues since 1996
“Untangling Amyloidosis 2019” from the December, 2019 American Society of Hematology conference.
Hear From Mackenzie Herself Regarding Her Journey
- Amyloidosis Foundation profile
- Mayo Clinic’s “In The Loop” newsletter
- Facebook page
- YouTube Channel with videos on:
- Diagnosis
- Treatment
- Recovery
- Day 100
- Hair loss
- Caregivers
- The importance of early diagnosis
- Re-Birthday
- Stem Cell Transplant and Post-Chemo Tips from someone who’s been there, that aren’t necessarily covered by the hospital. The hospital will offer important recommendations, which you should pay close attention to. However, we found other things that were helpful. These won’t apply to all situations, so pick what you want.
- If getting your transplant outpatient, consider Airbnb and VRBO to rent a place near the hospital. We found quite a selection of those maintained specifically for medical needs and immune system-impaired patients. For us, it was a great alternative to staying in a hotel. You often have more space, have a feeling of “home,” can cook and control your own food, have a family/living room to spread out, and can be more cost-effective. They do, however, typically require a car to get around.
- Consider buying a commercial-grade portable air purifier. We found Amazon offers all sorts of sizes and price points, and research comparing models.
- Keep bottles of Purell hand sanitizer everywhere.
- Be mindful of minimizing what you bring inside from the outdoors. Think about leaving shoes and outerwear outside.
- Label food/drink containers with a sharpie to differentiate between you and the caregiver(s) so as minimize the spread of germs and bacteria.
- Smells and tastes will likely be really off, and potentially foul, making caloric intake a challenge. Be creative and talk to the healthcare professionals, as they can help you focus on getting calories, regardless of the source. We bought a little bit of a very wide variety, as it seemed nothing helped for long, and we could always buy more. We hear what works for one patient may not appeal to another. Just keep trying.
- Once the new stem cells are transplanted, those around you may notice you smell like creamed corn! It’s the stem cell preservative used, so it’s unavoidable. Keeping essential oils / aromatherapy near your bed, and a few drops inside your mask, may make the smell more tolerable.
- You will find you use lots of paper towels (instead of cloth towels), trash bags, and cases and cases of water.
- Launder bath towels and bedding frequently (and clothing, of course), as much of the concern to those with compromised systems is what is on the body/skin.
- If you are having a central line put in, consider a semi-fitted knit athletic shirt for sleeping to keep tubes from flapping around.
- You will likely be instructed to shower/bathe daily to help manage infection from the skin. Standing in the shower can be exhausting, so think about a bath. Buy some aromatic bath bombs for the bath water to offer some comfort.
- You may find it pleasing to put in an aromatherapy unit in your bedroom.
- Bring cozy comfort things for sleeping/resting that are new or have been cleaned: blankets, pillows, bathrobe, slippers, and stuffed animals.
- Bring favorite pictures to remind you of the many that love and support you, including pets too!
- When you’re not at the hospital each day, you’ll have downtime. Because you should limit your public exposure, bring things like puzzles, games, playing cards, Netflix, or books to keep you entertained.
- Having said that, you will get stir crazy and want to move (which is a good thing!). Do your best to take a walk, no matter how short. Every step matters!
- If you are feeling really adventurous, there are some places like grocery stores, Target and Walmart, that offer motorized carts; wear your mask, take sanitizing wipes and purell.
- If you lose your hair, feeling cold comes easily (even if you have treatment in the summer), so take hats, scarves, slippers, and cozy clothes to keep warm.
- When you’re out and about (bald and wearing a mask) people WILL stare at you. Pay them no mind. Rock the bald look!
- Keep a barf bowl handy, whether at your hotel room, house, car, or in your caregiver’s bag. It can come on suddenly. Having a lid can be helpful, especially if you’re out and about (Tupperware, or disposable Chinese food soup containers both worked well).
- Having QueaseEASE handy can help combat nausea onset; it has a blend of natural essential oils.
- Same for diarrhea to potentially come on suddenly, so having some diapers on hand, just in case, can be helpful.
- Depending on sleeping arrangements, having a baby monitor may be helpful for your caregiver.
- If possible, you should have your own separate bathroom (toilet, shower/bath), all of which should be disinfected regularly.
- Get a good thermometer (under the tongue many say works well), blood pressure monitor, and journal for the caregiver to log vitals, as well as your daily food and liquid intake.
- Think about your caregiver support, and have multiple of them, if possible. They will need breaks.
- Share with your caregiver and healthcare team daily about how you are feeling. Much can be done to adjust the support, and your healthcare team likely has therapies to assist with discomfort. Don’t suffer in silence!
- We had a long list of things to buy … we found most of them on Amazon, Sams/Costco, and the more specialized items at the hospital store.
- Keep a positive outlook. You will get through this, so take it one day at a time, or even one hour at a time if needed. Rely on your support system.
