When Beverly Hughes was diagnosed with hereditary ATTR (hATTR) amyloidosis in her late 60s, she was caught off guard. “My initial response was surprise and curiosity,” she recalled. “I had never heard of the disease, so I didn’t know what to expect.”

However, the diagnosis also brought a sense of relief. Her unusual symptoms — pain in her hands and feet, circulation problems in her legs, gastrointestinal issues, and extreme exhaustion — finally had an explanation. “I realized I probably wasn’t a hypochondriac,” she said.

Beverly’s initial relief transitioned into more challenging emotions as she began looking for information about her disease and experienced the loneliness that can come with living with a rare and chronic disease. Based on Beverly’s experiences, here are six steps you can take to understand your own diagnosis and find connection.

1. Do Your Research

At first, Beverly found it difficult to get the information she needed. “No, there were not!” she said when asked if there were helpful resources available to her early on. Once she turned to the internet, she began piecing details together. “Of course, when all else failed, I started Googling it,” she said. “I was surprised there was a lot of information about it, but I still didn’t know enough about what type of hATTR I had.”

2. Don’t Stop Seeking Answers

Beverly’s inquisitive nature led her to ask a lot of questions early on in her diagnosis, but not all healthcare professionals were receptive: “One nurse told me that I wasn’t sick enough for her to be getting back to me so often with answers to my questions.”

Beverly remained proactive, making appointments, undergoing tests, and researching as much as she could.

3. Seek Support From Others With Your Disease

Beverly’s journey was shaped by her brother, who had been diagnosed with hATTR amyloidosis before she was. “By the time he began getting treatment, he was very far along,” she said. “He was a huge help to me in understanding what I was dealing with.” Sadly, Beverly’s brother died from the disease.

Despite having a large family, including six children and many grandchildren and great-grandchildren, Beverly found that the journey with hATTR amyloidosis can be isolating. Even her husband didn’t seem to understand the extent of her fatigue and other symptoms. “He thought I was exaggerating,” she said. “I began to just research and keep my thoughts to myself.”

That sense of isolation changed when Beverly discovered MyAmyloidosisTeam. “I felt like I’d found friends I could really talk to,” she said. “That really helped my depression and loneliness.”

Through the community, Beverly has formed strong bonds with others who share her condition. “I feel very close to some of my online team,” she said.

Some of these connections led to in-person meetings, allowing members to finally put faces to familiar names.

4. Find Sources of Comfort

When asked how she handles tough days, Beverly’s response was simple: “I pray a lot.”

She is part of the African Methodist Episcopal Zion Church. In addition to her faith, she finds solace in her online “family,” where she can both listen to others’ challenges and share her own. “We are all empathetic towards each other,” she said.

5. Be Patient With Your Loved Ones

Over time, Beverly’s family became more supportive. “Now that it’s been about two and a half years since my diagnosis, I do feel more supported by my husband and sisters,” she said. One sister also has hATTR amyloidosis.

6. Remember That You Are Never Alone

Despite the challenges, Beverly has remained resilient. If she could share one message with someone newly diagnosed, she said, it would be this: “You are not alone, nor are you imagining things. Your body is really dealing with the varied symptoms of a rare disease that has only recently begun to be widely accepted and treated.”

Talk With Others Who Understand

MyAmyloidosisTeam is the social media network for people with amyloidosis and their loved ones. Members come together to ask questions, give advice, and share their experiences with others who understand life with amyloidosis.

Have you ever felt alone while living with hereditary transthyretin amyloidosis? Have you found ways to make connections? Leave a comment below, or start a conversation by posting on your Activities page.