Erdheim-Chester Disease Global Alliance

Facing a rare disease can seem like an uphill battle from time to time. The side effects of rare diseases, such as ECD are not only seen and felt from the disease itself or the treatments received. Many patients are faced with other effects that are not direct side-effects of the disease. Below are a few of these side effects and ways to help!

Social Isolation:

To an extent, the world is being urged to “stay at home” and isolate during the pandemic. This is familiar territory for rare disease families. A rare disease can isolate a patient and/or a family member both physically and mentally. It can be difficult to connect with others who do not understand what you are going through or the unknowns that you are also facing.

To help with social isolation, reach out to others with ECD! Connect with those who do understand what you are going through. Join a chat session, video chat, or if you are able – meet others that are local for coffee. You can even create your own weekly video chat!

**The ECDGA would like to hear from our members! Take this quick survey about your interest in talking with others on a virtual platform: Visual Chat with Peers? – Survey

Unpredictable Lifestyle:

Some patients may have had to make extreme lifestyle changes; (e.g., eating certain foods, exercising abilities, daily routine changes, vacation changes, forced to stop working, moving from your home, losing your ability to be self-sufficient, etc.) You may have been suddenly uprooted from a comfortable normal and forced to face a new, less predictable one. Depending on your specific situation, you may be facing this solely because of the COVID pandemic, or as a part of your ECD treatments, symptoms, or side-effects. This may leave you asking, “What does tomorrow hold?”
It is often hard trying to adjust to a new or unpredictable lifestyle. When a good change appears, accept it with grace. When a negative change is looming, if you can, start looking for alternatives before it actually happens. Change is constant, so we usually don’t notice the little or the expected changes; it’s when you are caught off-guard that you can get discombobulated. Despite the changes that are taking place in our world each and every day, keep moving forward!

Loss of Friendships:

Friends and family can be incredibly supportive. However, in many instances, they can also be extremely intimidated when it comes to helping a sick loved one, and may feel so overwhelmed themselves and not know what to do. You may see many friendships drift to the wayside, not at the fault of either party. This can make your difficult situation even harder to handle.
To help encourage a healthy friendship after diagnosis try a few of these tips:
- Educate friends/family about ECD.
- Take a close friend or relative to a doctor’s appointment with you.
- If you need something from a friend, communicate it to them!
- Extend your circle to new friends!