Multidisciplinary Telomere Biology Disorders Treatment
Managing TBD requires care across specialties depending on your needs:
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Hematology experts offer evaluation and monitoring for anemia, marrow failure, and blood cancers. They can also determine if a bone marrow transplants is right for you.
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Pulmonary specialists offer specialized care for ILD. They also offer evaluations for lung transplants.
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Hepatology providers offer screening and management of liver fibrosis, cirrhosis, and portal hypertension.
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Oral medicine specialists provide regular screenings for oral lesions that may progress to cancer.
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Medical genetics specialists offer family risk assessments and genetic counseling. They also coordinate telomere length and genetic testing.
Coordinating Care With Primary Children’s Hospital
U of U Health providers work closely with pediatric specialists at Primary Children’s Hospital to ensure a safe and easy transition for pediatric patients diagnosed with TBD. We also provide screenings for genetically inherited telomere biology disorders for families and adult relatives of pediatric patients.
Why Choose University of Utah Health?
As a Team Telomere Center of Excellence, our program offers coordinated appointments, collaboration across subspecialties, and access to specialized testing and treatment. You’ll benefit from our dedicated team’s experience in screening, diagnosis, and care for TBD across multiple organ systems.
Through ongoing research collaboration, we strive to advance our understanding of TBD and improve the lives of those impacted by these disorders. Our dedicated team is here to guide you through every step of your journey, providing expert care tailored to your specific needs
What Are Telomere Biology Disorders?
Telomeres are protective caps at the ends of your chromosomes. Telomeres shorten as your cells divide. If you have a telomere biology disorder (TBD), your telomeres shorten faster than normal. This can lead to diseases in your bone marrow, lungs, liver, or skin.
TBDs require coordinated care across multiple specialties:
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Oral medicine
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Medical genetics
The University of Utah Health Telomere Biology Disorders Center is staffed by experts who treat a variety of conditions. Our program offers evaluation and management for people with confirmed or suspected TBD. Our dedicated team works together across specialties to make sure you receive the best care possible.
Telomere Biology Disorder Diagnosis
TBD is diagnosed through telomere length testing. We may suggest a genetic analysis to see if your symptoms have an underlying genetic cause.
Telomere Biology Disorders Symptoms
TBD symptoms can appear in both kids and adults. You may have a single symptom or more than one. TBD has several common symptoms:
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Rough, thick nails, white patches in your mouth, and unusual skin coloring patterns (dyskeratosis congenita)
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Low blood counts, including anemia
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Scarring of your lung tissue, which can make it harder to breathe (lung fibrosis)
Our Telomere Biology Disorder Specialists
Hematologists
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Pulmonologists
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Hepatologist
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Genetic Counselors
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Make an Appointment
Referrals are welcome but not necessary when making an appointment at the Telomere Biology Disorders Center at U of U Health. Call 801-585-5122 to make an appointment. When scheduling your visit, please have your insurance information and relevant medical records ready, including prior bone marrow, lung, liver, or genetic testing and any imaging studies.
Guidance for Referring Providers
Providers may initiate a referral through the referral portal. You can also call us:
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For a patient with a hematology disease and a concern for TBD, call 801-585-2626.
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For a patient with a pulmonary disease and concern for TBD, call 801-581-5943.
Please include the appropriate records:
- Relevant clinical notes and lab reports
- Telomere length or genetic testing results (if available)
- Pertinent imaging and pathology
Our team will coordinate specialty consultations and provide a summary of findings back to the referring provider.