First Steps dealing with JMML
Advice from the JMML Foundation for parents of newly diagnosed children
Based on our experiences and input from families of JMML patients, the Foundation
recommends the following first steps for families with children who have just been
diagnosed with JMML:
- Join the Yahoo JMML Support Group. This link 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. Members post to a
discussion board that automatically emails updates to all members. This board may move to
the Foundation website in the future but is fully functional now on the Yahoo group site.
- Identify the hospital your child will be treated at and make sure they start the search for a bone marrow donor immediately. The only successful treatment currently for JMML is a bone marrow 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. More information on bone marrow testing and transplants.
- Contact us as JMML family members and join our own registry so we can better serve you.
We will soon be posting a form that you and your doctor/social worker can fill out
regarding your child’s diagnosis and other facts about them. We intend to use this
information in the future to qualify your child for services as we add them, to ensure
that your privacy is protected by providing certain information only to verified patient
families, and to be able to better advocate for and support all our JMML families. Until
that form is posted, please use the Contact Us form to let us know you’re
there, and we’ll get back to you personally.
- Educate yourself. Use our website as a starting ground for learning about JMML, and use
the Yahoo Support Group and 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.
- You are your child’s best advocate. Push to make sure your healthcare providers
explain everything you want to know to you, and 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 the word about JMML. Please send us a short story about your child with JMML and a picture of them by email to the
. We'll post them to our website. Sharing your child through our Foundation helps build our community and helps put a face to an otherwise little known disease. Together, we can make a difference.