Amyloidosis Support Groups - AmyloidosisSupport.org

Home Page

Awareness Building

Amyloidosis Info

Amyloidosis Centers

TTR & Familial

Important Clinical Trials

Patient Registry

Upcoming Events

Webinars

About Us

Resources

Treatment Centers

Awareness Items

AMY Blogs

Patient's Day

In Memoriam

Donations

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

LECT2 Support

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

In Memoriam

This disease has taken many loved ones and left many voids. We only post the notices when asked.

The Mourner's Bill of Rights
by Alan D. Wolfelt, Ph.D.
Center for Loss

Though you should reach out to others as you do the work of mourning, you should not feel obligated to accept the unhelpful responses you may receive from some people. You are the one who is grieving, and as such, you have certain "rights" no one should try to take away from you.

The following list is intended both to empower you to heal and to decide how others can and cannot help. This is not to discourage you from reaching out to others for help, but rather to assist you in distinguishing useful responses from hurtful ones.

1. You have the right to experience your own unique grief.

No one else will grieve in exactly the same way you do. So, when you turn to others for help, don't allow them to tell what you should or should not be feeling.

2. You have the right to talk about your grief.

Talking about your grief will help you heal. Seek out others who will allow you to talk as much as you want, as often as you want, about your grief. If at times you don't feel like talking, you also have the right to be silent.

3. You have the right to feel a multitude of emotions.

Confusion, disorientation, fear, guilt and relief are just a few of the emotions you might feel as part of your grief journey. Others may try to tell you that feeling angry, for example, is wrong. Don't take these judgmental responses to heart. Instead, find listeners who will accept your feelings without condition.

4. You have the right to be tolerant of your physical and emotional limits.

Your feelings of loss and sadness will probably leave you feeling fatigued. Respect what your body and mind are telling you. Get daily rest. Eat balanced meals. And don't allow others to push you into doing things you don't feel ready to do.

5. You have the right to experience "grief bursts."

Sometimes, out of nowhere, a powerful surge of grief may overcome you. This can be frightening, but is normal and natural. Find someone who understands and will let you talk it out.

6. You have the right to make use of ritual.

The funeral ritual does more than acknowledge the death of someone loved. It helps provide you with the support of caring people. More importantly, the funeral is a way for you to mourn. If others tell you the funeral or other healing rituals such as these are silly or unnecessary, don't listen.

7. You have the right to embrace your spirituality.

If faith is a part of your life, express it in ways that seem appropriate to you. Allow yourself to be around people who understand and support your religious beliefs. If you feel angry at God, find someone to talk with who won't be critical of your feelings of hurt and abandonment.

8. You have the right to search for meaning.

You may find yourself asking, "Why did he or she die? Why this way? Why now?" Some of your questions may have answers, but some may not. And watch out for the clichéd responses some people may give you. Comments like, "It was God's will" or "Think of what you have to be thankful for" are not helpful and you do not have to accept them.

9. You have the right to treasure your memories.

Memories are one of the best legacies that exist after the death of someone loved. You will always remember. Instead of ignoring your memories, find others with whom you can share them.

10. You have the right to move toward your grief and heal.

Reconciling your grief will not happen quickly. Remember, grief is a process, not an event. Be patient and tolerant with yourself and avoid people who are impatient and intolerant with you. Neither you nor those around you must forget that the death of someone loved changes your life forever.

A special thanks to Jessica Knutson who donates a portion of her proceeds in memory of her dear friend, Linda Winner, of Olympia Washington who passed away in January of 2010.

Amyloidosis Candle Lighting Prayer/Blessing

Dear G-d,

We thank you for the good things you brought to the world of Amyloidosis this past year. The new research and treatments and the successes and lives that were saved.

May you give us even more next year as we promise to follow your commandments and faithfully fulfill our mission of helping others afflicted with this disease and families and friends as well. Please give us a future and help the survivors make it to the next candle lighting. Help those waiting for treatment, organs, and help receive it quickly so that all may rejoice in your generosity.

Help us to take care of our loved ones with this disease and help our loved ones by listening to their prayers of hope and sometimes despair. We promise not to give up and to have faith in You and Your judgment. We will not question it, or will try not to and ask that You forgive us should we forget. We’ve lost too many to this disease and know You must have Your reasons and we are not supposed to question them; but You do help those that help themselves and our doctors and various organizations and many individuals are doing so therefore we must believe and need to believe that our lost loved ones have a special place in Your home. They went through so much as did their loved ones and we know they are at peace and thank You for that.

This disease has taught us much and we have learned the internet, research, loving our fellow man/woman, and how to give and take without question. We all have a new tolerance for those with afflictions and for others of all races, religions, creeds, national origins, and speech and dialect differences. When we light this candle next year may we have even more to thank of You and less to ask.

Your own words___________________________...

In order to see the Rainbow, you must first endure some Rain.

IF YOU WISH PRE-PRINTED DONATION ENVELOPES PLEASE LET US KNOW.

2020 CALENDAR

WEBINARS (Virtual Meetings)

Arizona (Phoenix)

California (Los Angeles)

California (San Diego)

Chicago

Colorado

Detroit

Florida (Jacksonville)

Florida (Miami)

Florida (Tampa)

Georgia/Alabama

Indianapolis

Kansas City

Louisiana

Maryland (Baltimore/D.C.)

Maryland (Hagerstown)

Massachusetts

Minnesota

Nevada

New York City

New York (Rochester)

North Carolina

OSU/Cleveland Clinic

Philadelphia

Portland

St. Louis

South Carolina

Texas (Dallas)

Texas (Houston)

Utah

Virginia

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)