Medical Self Advocacy

  • Learn as much as you can about CLOVES. CSC, Boston Children’s Hospital and Cincinnati Children’s Hemangioma and Vascular Malformation Center are just a few places where you can find reputable, science-based information.  
    • Tutorial on how to evaluate the health information you find on the Internet
    • Where can I learn more about CLOVES?
      • Sign up for our mailing list and newsletter to be informed of the latest news and local events.
      • If you or someone in your family has been diagnosed with a CLOVES Syndrome, please message our Facebook Page and add our Welcome Account.
      • Our Facebook Support Group has its privacy set to “Secret.” This means it will not show up on Facebook searches. We’ve done this to ensure privacy and to maintain a safe environment for us to share.
      • Joining our CLOVES community private Facebook group will give you the opportunity to connect with many of the people diagnosed with this rare disease to share information and support.
      • Check out our CLOVES Facebook Page to share information and raise awareness about CLOVES with friends and family.
      • Visit our FAQs
  • Make a list of questions for your medical provider before every appointment. It is easiest to keep an ongoing list of questions as you have them. Many people find it most comfortable to write them down in their phone Notes. This allows you to immediately write down your question before you forget it. There are also dedicated apps you can find in your phone’s app store.
  • Some medical offices have online portals where you can send questions to your doctor. Other doctors are willing to provide you with their office email. Take advantage of these and send them questions as you have them.
  • During your appointment, ask questions about anything you’ve read about emerging treatments, medical advancements, and other information you may have found. General providers are not always up to date on the latest medical journals and studies. It is best to have the name of the medical journal or study so that your provider can quickly look up the information.
  • Always ask for an explanation if you do not understand what your medical provider is telling you. Sometimes healthcare providers will use jargon that you may not understand. Tell them you don’t understand and ask them to explain in another way.
  • Take notes during appointments. If possible, have another person with you so they can take notes.