| The Marfan Foundation

Your child's doctor and healthcare

Correct medical management of Marfan or related disorders is essential to ensure that your child is able to live a dynamic and satisfying life. Thanks to research and advances in medical treatment the average life span is now the same as for those without Marfan or related disorders.

How to Find the Right Doctor

It is best to start by finding a doctor who has experience working with people who have Marfan syndrome. The Marfan Foundation can help you find a doctor who knows about Marfan syndrome and related disorders. To find a doctor:

  • Contact our Help Center at 800-8-MARFAN (862-7326) ext. 126 or email us at support@marfan.org
  • Download our clinic directory, which is comprised of Marfan syndrome and related disorder clinics around the United States.
  • Attend the Foundation’s annual family conference which provides free patient health assessments by the nation’s experts for diagnosis and specific Marfan syndrome and related disorder issues.

Finding the right doctor

How Can I Make the Most of Our Visits to the Doctor?

You may feel overwhelmed with information when your child is first diagnosed with Marfan syndrome. Many people find it helpful to jot down questions as they think of them; then when you talk to your child’s doctors, you can be sure all your concerns are addressed. If your child is old enough, you may want to suggest that your child write down what he/she would like to ask their healthcare provider.

Some questions you may want to ask are: 

  • How did you make this diagnosis?
  • Is there any other condition my child might have instead?
  • What if my child does not have enough features to get diagnosed? What should I do?
  • Can my child’s excessive growth be stopped?
  • How often should my child be checked by a cardiologist and/or clinical geneticist?
  • Can children with Marfan syndrome exercise or play sports?
  • Is there anything my child can do to reduce the risk of heart problems?
  • Can my child wear contact lenses instead of glasses?
  • How and when should I talk to my child about Marfan syndrome?
  • What services are available to help my child and my family to cope with the
  • What are the psychological and emotional effects of this condition?
  • What is the risk of aortic dissection in children?
  • Are there any other resources you can point me to for more information?
  • More information on specific questions can be found at these sites: Heart and Blood Vessels, Eyes, Bones and Joints, Nervous System, Lungs and Teeth. 

What is the most important thing to do after receiving the diagnosis?

What role does a parent play with their child's doctor?

Most people who have Marfan syndrome or a related disorder are able to lead productive and satisfying lives. Day-to-day management and life choices including routine treatment and attention to physical activity guidelines is a powerful way to safeguard your health and maintain your quality of life.

Quality of life is accomplished when you acknowledge or discover what is important to you, your child and your family.  Once you have identified these elements you can begin to make certain they are always a part of the overall strategy of your lives. 

Healthcare Coverage

When you have Marfan syndrome or a related disorder, you must to have appropriate health care coverage. Read your insurance plan carefully and keep in mind the features of your child’s condition now, as well as what could become more serious in the future and require additional medication and surgery. When evaluating your current health insurance or exploring new plans, make sure it:

  • Includes disability services
  • Covers major surgeries and, if so, what percentage of the cost does the plan cover
  • Provides discounts on medications
  • Allows you to visit the healthcare provider of your choice and, if not, provides in-network access to doctors who are familiar with Marfan syndrome and related disorders
  • Covers out-of-state doctors and surgeons
  • Covers treatment for genetic disorders/pre-existing conditions
  • Requires you to be responsible for a co-payment

There are several ways you can attain health insurance to help you cover your child’s medical expenses such as, employer-based health insurance, Medicaid/Medicare, and the Affordable Healthcare Act.

Remember that going without health coverage for more than 63 days will result in the loss of some legal protections; therefore, we urge everyone to stay insured if that is possible.

How did you navigate medical insurance?

Benefits for Children with Disabilities

Your child may be eligible for Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI) or the Children’s Health Insurance Program.

The Supplemental Security Income program makes monthly payments to people with low income and limited resources who are 65 or older, blind, or disabled. Your child, under the age of 18, can qualify if they meet the Social Security’s definition of disability for children, and if their income and resources fall within the eligibility limits. SSI varies from one state to another because some states add to the SSI payments. Your local Social Security office can tell you more about your state’s total SSI payment.

The Social Security Disability Insurance program pays benefits to adults who have a disability that began before they became reached the age of 22 years old. Social Security considers this SSDI benefit as a “child’s” benefit because it is paid based a parent’s Social Security earnings record. For a disabled adult to become entitled to this “child’s” benefit, one of their parents:

  • Must be receiving Social Security Retirement or disability benefits.

or

  • Must have died and have worked long enough under Social Security.

These benefits are payable to an adult who were claimed on a parent’s Social Security earnings record prior to age 18. Social Security makes the disability decision using the disability rules for adults. SSDI disabled adult “child” benefits continue as long as the individual remains disabled. Your child does not need to have worked to get these benefits.

The Children’s Health Insurance Program enables states to provide health insurance to children from working families with incomes too high to qualify for Medicaid, but too low to afford private health insurance. The program provides coverage for prescription drugs, vision, hearing, and mental health services, and is available in all 50 states and the District of Columbia. Your state Medicaid agency can provide more information about this program. You can also get more information about coverage for your children at www.insurekidsnow.gov or by calling 1-877-543-7669.