Home Page

Awareness Building

Amyloidosis Info

Amyloidosis Centers

TTR & Familial

Important Clinical Trials

Patient Registry

Upcoming Events


About Us

Contact Us


Treatment Centers

Awareness Items

AMY Blogs

Patient's Day

In Memoriam


Were you diagnosed with Cerebral Amyloid Angiopathy (CAA)?
Click Here

Amyloidosis Support Groups

We are a phone call or email away!
24/7 TOLL FREE HELP/HOT LINE: 866-404-7539
OR EMAIL: Info@amyloidosissupport.org

Getting through the holidays

Regardless of whether we are experiencing anticipatory grief for a loved one stricken with amyloidosis or the heart-wrenching loss of one we so dearly loved, holidays can be difficult.

Following are some suggestions, provided by the National Hospice and Palliative Care Organization that may help during the holiday season. (More information about dealing with grief is available at www.caringinfo.org.)

* Plan for the approaching holidays. This might be a difficult time for you. The additional stress may affect you emotionally, cognitively, and physically; this is a normal reaction. Be prepared and gentle to yourself.

* Recognize that the holidays might not be the same. Expecting everything to seem the same might lead to disappointment. Doing things a bit differently can acknowledge the change while preserving continuity with the past.

* Be careful not to isolate yourself. It's all right to take time for yourself but don't cut yourself off from the support of family and friends.

* The holidays may affect other family members. Talk over your plans and share your feelings. Respect other's choices and needs, and compromise if necessary.

* Avoid additional stress. Decide what you really want to do, and what can be avoided.

For people dealing with friends or family members who are grieving the loss of a loved one:

* Be supportive if the person wants to do things differently this year.

* Offer to help with baking or cleaning. These tasks might seem overwhelming.

* Volunteer to help with holiday shopping or offer catalogs and suggestions of online shopping sites.

* Invite the person to attend a religious service with you.

* Extend an invitation to your home.

* Help your loved one prepare and mail holiday cards.

* Ask the person if he or she is interested in volunteering with you. Doing something for someone else might help the person feel better.

* Never tell someone to "get over it." Instead, give the person hope that, eventually, he or she will enjoy the holidays again.

* If your friend wants to talk about his or her feelings or the person who died, take time to listen.

-- Sheila M. Setter

While you're dancing the night away, make sure that your heart doesn't start a tango of its own. Drinking too much alcohol can send you to the ER with atrial fibrillation-irregular heartbeat-and light-headedness. Doctors nicknamed the December surge in atrial fibrillation cases holiday heart. How much is too much? Heavy drinking at three parties within a week or binge drinking-four to six or more drinks in an evening, says cardiologist Marc Tecce, MD, of Thomas Jefferson University Hospital. Your erratic heartbeat should return to normal within 24 hours.

Party smart: Limit the booze

from: Prevention Magazine, www.prevention.com

Notes from the recent Carer Givers’ “breakaway” session at the London Amyloidosis Seminar on 2nd June 2005 can be found here

Support Groups


WEBINARS (Virtual Meetings)

Arizona (Phoenix)

California (Los Angeles)

California (San Diego)




Florida (Jacksonville)

Florida (Miami)

Florida (Tampa)



Kansas City


Maryland (Baltimore/D.C.)

Maryland (Hagerstown)




New York City

New York (Rochester)

North Carolina

OSU/Cleveland Clinic



St. Louis

South Carolina

Texas (Dallas)

Texas (Houston)



Washington (Seattle)

Washington (Spokane)

Washington DC

We invite our pharmaceutical liaisons to our support group meetings to help in our goal of educating and empowering our patients. The donations and/or grant received from these companies are unconditional, and the ASG does not endorse any one of their products over any other types of amyloidosis treatment. These treatments are mentioned at our meetings, on our website, and other electronic format for educational purposes. We encourage you to consult your amyloidosis professional when choosing a treatment plan.

Order ASG Shirts Here (PDF Form)