Managing Castleman’s Disease

Being diagnosed with a serious disease can be upsetting. It can also make you feel confused and powerless. While each of us needs to come to terms with a situation like this in our own way, taking certain actions may help you feel more in control. Consider trying some of the following:

  • Learn as much as you can from your doctor about the disease and your treatment options. Take an active role in your treatment decisions. It is also helpful to ask for recommendations about websites and organizations dedicated to Castleman’s Disease.
  • Talk with your family and friends about what you are going through. Share your feelings with them, so they can help provide the kind of support you need.
  • Track your symptoms and bring this information to your doctor’s appointments.

Being your own advocate

Whether you have been diagnosed with Multicentric or Unicentric Castleman’s Disease, it is important that you take an active role in the treatment and management of your illness. Many helpful resources, including organizations and websites, are dedicated to providing patients and caregivers with information about Castleman’s Disease. Here is a list of resources for you to check out.

Take the time to educate yourself about your illness in order to better understand how it affects your body, and the ways that you can help manage it. Also, ensure that you remain in contact with your doctor, whether to ask a question, share an update about how you are feeling, or to get more information about Castleman’s Disease. In order to help inform yourself, to the right is a list of questions that you may want to ask your doctor.

How to explain your diagnosis of Castleman’s Disease to others

Being diagnosed with Castleman’s Disease is a life-changing event, though you should not feel that you are alone. At this time, it is important to connect with family and friends to let them know about your diagnosis, and to ask for their help when you need it. Having a support network around you will help you better manage through the more challenging times, to lend a hand if you should need help, such as with grocery shopping, or to lend an ear if you need someone to talk to. If they have additional questions, you can also share the list of resources in the “Connect With Others” section.

Here are a few helpful reminders when speaking with others about your diagnosis of Castleman’s Disease:

  • Let family and friends know that Castleman’s Disease is a rare disease. It is not a cancer, but it is a long-term illness that can be difficult to live with.
  • The symptoms of Castleman’s Disease are not always obvious. However, your family and friends should know that some of the symptoms you may experience – such as fatigue, abdominal pain, weakness, or fevers – are very real and may impact your daily life.
  • There will be times when you feel better, and times when their support is needed. Never hesitate to reach out to others – whether for help with everyday chores or to listen to your concerns.

Track your symptoms

At times you may experience symptoms of Castleman’s Disease, and at times it may seem that the illness has gone away. It is critical to remember that treatment may not cure Castleman’s Disease. Regularly tracking your symptoms will be valuable information to share with your doctor during your appointments. You can use a journal or the Symptoms Checklist. You can also print and take the completed Symptoms Checklist to your next doctor’s appointment.

Sample questions for your doctor if you have been diagnosed with Castleman’s Disease:

  • Is my Castleman’s Disease multicentric or unicentric (localized)?
  • How can I monitor my symptoms?
  • Will my symptoms ever go away?
  • Will my symptoms get worse over time?
  • What are my treatment options?
  • Where can I get treated?
  • Should I change my lifestyle in any way?
  • How often will I come to see you?
  • Should I get a second opinion?
  • Have you seen a patient or patients with this disease?
  • Where can I get more information on Castleman’s Disease?
  • Is there anywhere I can seek support and/or connect with other people who are affected by this disease?

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