Turner Syndrome is a complex disorder that is managed by healthcare providers at every stage of life. Finding a doctor is sometimes a challenge. The diagnosis requires a variety of physician(s) to be a part of the healthcare team. While there is a growing list of specialized centers of care for Turner Syndrome, there currently may not be a center of care located near you. We urge you to take the initiative to do some research and advocate for yourself and for this cause.
Become part of the solution. We do not have all of the answers to every question or the solution for every need, but with you we can identify helpful resources that are needed. If you find a useful resource in your community, please contact us to let us know!
Role of primary and specialty care providers:
Primary care physician(s) are central to your care, maintain your records and medical history. It is good practice to release lab & specialists reports to your primary care physicians for oversight and adherence to best care practices.
Specialists will care for specific medical conditions associated with TS. Most people will have upwards of 10-13 different specialists over a lifetime.
Organizing your medical team is essential. It is up to you to find providers that are a good match for you. After you receive a referral for care, call the medical office and speak with a doctor or nurse to ask insightful questions, such as:
- Does the practice care for patients with Turner Syndrome?
- If no, ask if they would be willing to learn more to provide ongoing care. Offer to provide the clinical care guidelines. Send them a link via email or print and bring to the office.
- If yes, ask:
- How many patients with TS have they cared for?
- Mention some of your health concerns and confirm they possess a willingness to help you receive essential, ongoing, evaluations and treatment.
- Do you feel they are responsive to your concerns?
SHARE A RESOURCE – We are always in search of knowledgeable pediatric and adult care providers. If you have a recommendation, we would love to hear from you! Click the link at the bottom on this page to share a professional resource that you have found helpful.
Commonly Sought After Specialists
Every person is unique and may or may not need to be seen by this sampling of specialists:
- Medical geneticist
- Hormone disorder specialist (endocrinologist)
- Heart specialist (cardiologist)
- Kidney specialist (nephrologist)
- Bladder specialist (urologist)
- Specialist in women’s health (gynecologist)
- Specialist in skeletal disorders (orthopedist)
- Ear, nose and throat (ENT) specialist
- Dental specialist in correcting problems with the alignment of teeth (orthodontist)
- Specialist in vision problems and other eye disorders (ophthalmologist)
- Mental health provider, such as a (psychologist or psychiatrist)
- Developmental therapist, who specializes in therapy to help your child develop age-appropriate behaviors, social skills and interpersonal skills
- Special education instructors
- Therapy; speech, physical, occupational
- or other specialist(s)
Out and about? Consider protecting yourself by carrying an Emergency Contact Card on your person.
Advocate for TS. There are many ways and reasons to GET INVOLVED.
We stand together with you to make a difference.
SHARE A RESOURCE – Finding resources & specialized care for Turner Syndrome can be challenging. We are asking the TS community to share helpful resources they have found to for knowledgeable, compassionate, and accessible care. Sharing resources is a great way to help others. Together, we can expand access to care!