Do you or a loved one have health challenges due to Turner Syndrome? Struggling with finding the doctors you need in order to stay healthy? This article will help you learn how to find doctors that can help you with your specific health needs, called specialists, and how to refer others to specialists that have positively impacted your or your loved one’s health.
How do I find a Turner Syndrome specialist?
What are specialists, and how are they different than primary care physicians/doctors?
Specialists are doctors who help you overcome health challenges in specific areas that they specialize in.
Primary care physicians are different from specialists since they are the first doctors you talk to when you have health challenges because they record your medical history. They are the ones who report you to the specialists to take a deeper look into your health challenge and how it should be treated.
What are some specialists that I should visit if my loved one or I should visit to overcome health challenges related to TS?
Most females with Turner Syndrome go to many specialists throughout their lifetime- around 10-13.
Here are some types of specialists that you or your loved one may go to for treatment of health concerns related to TS:
- Medical geneticist
- Skeletal disorders specialist (orthopedist)
- Hormone disorder specialist (endocrinologist)
- Women’s health specialist (gynecologist)
- Mental health provider, such as a (psychologist or psychiatrist)
- Heart specialist (cardiologist)
- Teeth alignment specialist (orthodontist)
- Bladder specialist (urologist)
- Vision specialist (ophthalmologist)
- Ear, nose and throat (ENT) specialist
- 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)
Where can I find specialists in my state to help treat my or my loved one’s Turner Syndrome?
In the US, there are only 24 states that have Specialized Centers of Care (SCC). Each SCC is different, but they all offer a comprehensive care experience for individuals impacted by TS. This map shows which states have these centers. On the map, a green state means that the state does not have an SCC, while a blue state means it does.
Here are the states with a SCC.
- New Jersey
- New Mexico
- North Carolina
- New York
- South Carolina
What do I do if my state does not have a center?
If your state does not have a center, then you can:
- Ask your doctor to recommend an endocrinologist, a doctor who takes care of your hormone (endocrine) system, to go to, or find one yourself.
- Talk to your endocrinologist and learn how they can help you or your loved one with diabetes, metabolic disorders, infertility, short stature, and other health challenges associated with TS.
- Call medical care centers and find out if they care for Turner Syndrome patients.
- Did they answer yes? If so, ask them how many TS patients they cared for and communicate your health concerns with them.
- If they say no, ask if they are willing to learn about Turner Syndrome and how they should take care of you by having them read these clinical guidelines. You can send them via email or by giving the print version to them in the office.
- Whether they say yes or no, make sure you know that they truly care about your long-term health and will do anything they can to help you.
- Before you talk with your doctor or nurse for the first time, prepare your questions and concerns on a piece of paper beforehand so you can be more confident the day of your appointment.
- If finding a specialist is successful, make sure that the findings from your new specialist are given to your other specialists and primary care doctor for now on. That way, every one is continually updated about your overall health.
How can I help others who are trying to find a Turner Syndrome specialist or other resources?
Want to help others like you or your loved one? Want to give a shoutout to a specialist who truly care about your wellbeing, wants to keep in the loop with other specialists about your overall health, and utilizes their experience with patients who have TS to give you the best treatment possible?
Refer to your specialist here, and answer a series of short questions about:
- Where you live, so we can refer your resource to other people who live in your area;
- If you or someone in your family has Turner Syndrome so we know your connection with TS;
- Your email address, cell phone number, and other things that can help us contact you with more resources to help you or your loved one; and
- Addresses, names, and other important info about your recommended specialist(s) or resource(s)
Your personal information will be kept confidential between you and TSF. TSF will use your personal email to give you resources that can help you or your loved one overcome Turner Syndrome’s health challenges.
The only info that will be shared with others outside of TSF is info about your recommended resource and/or specialist.
Overall, it is crucial for you and/or your loved one to get the help you need by finding, contacting, and using the specialists that you and your loved one needs to live healthy, happy lives. Furthermore, it is important to refer specialists and/resources who are positively impacting you or your loved one’s health using the questionnaire explained above. That way, you can help others like you find the help they need to overcome their health challenges!
Written by Elizabeth Rivera, a TSF blog writer and a member of TSF’s Communications Department.