Taking care of your loved one and yourself

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For Caregivers

Caregivers for people with iMCD

Being a caregiver for a loved one who has idiopathic multicentric Castleman disease (iMCD) can be tough. Every day can bring a different challenge, and the best way to help your loved one is to educate yourself about iMCD so you can be prepared for the challenges ahead. 

Use the resources available online to learn about Castleman disease, as well as treatments for iMCD and their possible side effects. Check with your doctor’s office for any additional resources. 

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A tool that helps track symptoms

It’s important for patients to track their symptoms and report them to their doctor so that they can receive proper care. 

I was the eyes and ears. I was just listening to everything, researching myself and talking to the doctors, and trying to figure out what everything was.

Dina, iMCD caregiver WATCH DINA’S STORY
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The importance of self-care

As a caregiver, it’s crucial that you take care of yourself. Anxiety, irritability, and depression are some of the many emotions that caregivers may experience. Focusing on your mental health is also important so that you are prepared to help your loved one deal with the challenges ahead.


Preparing for the ups and downs

Your loved one may become depressed, angry, or stressed out because of their situation. Short walks, stretching exercises, and yoga are good options. Please consult your doctor before beginning an exercise routine. 


Stay organized

Maintaining records of medical reports, test results, medications, and allergies is important. Always have your doctor’s office and pharmacy phone numbers handy—save them on your cell phone. Block your calendars and set reminders for upcoming appointments. 


Make time for yourself

Taking care of your mental and emotional health is important. Ask a friend or family member to look after your loved one so that you can do the things you are passionate about. 


Join online communities

There are communities that offer support for caregivers and patients with rare diseases. Connect with others to learn how they are dealing with the challenges they are facing.

Community Support