Based on our own experiences and on input from other families of JMML patients, the Foundation recommends the following first steps for families with children who have just been diagnosed with JMML:
Join a JMML support group online
Find a hospital
- The Facebook JMML Support Group will connect you with other families who are experiencing or have lived through the same disease as you and who can offer strength, compassion, sanity checks, and their own experiences. A previous online discussion group, the JMML Support Group on Yahoo Groups, was very active from 2002-2009, and discussions are still available online for new members to review as desired.
Join our patient registry
- Identify the hospital your child will be treated at and make sure they start the search for a stem cell donor immediately. The only successful treatment currently for JMML is a stem cell transplant. Finding a donor immediately gives you more security should your child's symptoms progress without warning. Family members are the most likely candidates for matches - urge them and extended family to be tested for bone marrow type. While a search through national and international bone marrow registries can take a few months, it has taken up to and more than a year in some cases. Click here for more information on bone marrow testing and stem cell transplants.
- Join our own registry as JMML family members so we can better serve you. Having information about the JMML community makes us a better advocate and support resource for all JMML families. Please use the Contact Us form to let us know you’re there, and we’ll get back to you personally.
Be assertive in your child's care
- Use our website as a starting point for learning about JMML, and use the JMML Facebook Support Group and our website forums to learn more about other individual experiences. When you have a question that is unanswered, ask it through the support group or through our Contact Us form. There will be times when you will be asked to make a decision about your child’s treatment, and knowing more about JMML at those times will help you distinguish between differing recommendations.
Share your story
- You are your child's best advocate. Make sure your healthcare providers explain to you everything you want to know. If something doesn’t make sense, press the issue. There are many, many healthcare providers who truly love our children and are very competent in their job who still make mistakes, and treatment for JMML is not at all an exact science yet. Do not be afraid to question your doctors because it makes them better care providers as well.
- Help us get out the word about JMML. Please send us a short story about your child with JMML through our Contact Us link. We'll follow-up with a request for a picture of them by email, and we'll post them to our website Gallery. Sharing your child's story through our Foundation website helps build our community and helps put a face to the public to an otherwise little known disease. Together, we can make a difference.
Last updated: 6 Dec 2014 by Fred Dini