An integrated approach to treating telomere diseases
People with telomere biology disorders are vulnerable to a wide range of conditions. These may develop and respond to treatment differently than in people who do not have telomere-related disorders.
Our fully integrated care model brings together experts in hematology and bone marrow transplantation, interstitial lung disease (ILD) care, lung transplantation, hepatology, oral medicine, immunology, genetics, and other subspecialties, who have specific expertise in these rare conditions. Rather than navigating multiple appointments across disconnected services, you’ll receive coordinated care designed around your individual needs, risks, and long-term health goals.
Telomere biology disorders often affect bone marrow and blood. Common issues include anemia, low platelet counts, and problems with the immune system. Some people have a higher risk of blood cancers. Regular blood tests and long-term hematology care help detect changes early and guide treatment. In severe cases, bone marrow transplantation may be considered.
Some patients develop interstitial lung disease (ILD), which causes scarring in the lungs and makes breathing difficult. Lung disease linked to telomere disorders may progress more quickly and requires specialized care. For advanced disease, evaluation at a center with lung transplant expertise may be needed.
Telomere biology disorders can also affect the liver over time. Some people develop liver scarring, portal hypertension, or liver failure. Regular screening and close monitoring help identify liver problems early, and transplant evaluation may be needed in advanced cases.
Many people with telomere biology disorders develop changes in the mouth, such as white patches (leukoplakia) or dental problems. These lesions can raise the risk of head and neck cancers. Routine oral exams help with early detection and treatment.
Because telomere biology disorders can be hereditary and can be passed on through generations, genetic testing and counseling play an important role in care. Genetics specialists help confirm the diagnosis, assess risk for family members, and guide screening and family planning decisions.