Since APS Type 1 is multi-dimensional disorder in nature we have provided links to some of the condition you may face, other global sites that may provide additional education resources, and the latest research that’s being conducted in this area for you to read. Since we often see multiple specialists it is important to understand how the condition can manifest itself and be aware of other challenges you may face so you can properly prepare and support your physician in treating APS Type 1 in totality.




Autoantibodies against cytokines: back to human genetics

Blood February 21, 2013 vol. 121 no. 8 1246-1247

Anne Puel and Jean-Laurent Casanova

A longitudinal follow-up of Autoimmune polyendocrine syndrome type 1

The Journal of Clinical Endocrinology & Metabolism, June 2016

Øyvind Bruserud, Bergithe E. Oftedal, Nils Landegren, Martina Erichsen, Eirik Bratland, Kari Lima, Anders P. Jørgensen, Anne G. Myhre, Johan Svartberg, Kristian J. Fougner, Åsne Bakke, Bjørn G. Nedrebø, Bjarne Mella, Lars Breivik, Marte K. Viken, Per M. Knappskog, Mihaela C. Marthinussen, Kristian Løvås, Olle Kämpe, Anette B. Wolff , Eystein S. Husebye

Bruserud O et al report one of the largest case series of patients with APS-1 to date, with data gathered from a Norwegian registry created in 1996. Among 52 patients followed, 2/3 of patients developed hypoparathyroidism before 15 years of age and 2/3 developed the classic triad of hypoparathyroidism, adrenal insufficiency and candidiasis by 25 years of age. 15 of the 52 study patients died during the study and the median age of death was 34 years old, with the majority of deaths in patients younger than 25 years old caused by either adrenal insufficiency or seizures due to hypoparathyroidism and its resultant hypocalcemia. They also noted that 8% of patients developed oral cancers. The deaths of young undiagnosed children with endocrine insufficiency is a warning to medical care providers to become more aware of early signs of disease and the striking incidence of oral cancers suggests that routine screening for this complication is likely warranted. More research is needed to better understand how these problems develop and to optimize management strategies.

Our story about Gaby’s 6 years of missed diagnosis, and how you can prevent this from happening.

Read Gaby’s Full Story

If You Are Traveling to the NIH

Bethesda Hotels – The following hotels are on the NIH shuttle route:

Bethesda Marriott

5151 Pooks Hill Road,
Bethesda, MD
(301) 897-9400
Complimentary shuttle directly to the NIH Clinical Center

Doubletree Hotel Bethesda

8120 Wisconsin Ave.,
Bethesda, MD
(301) 652-2000
Parking fee

Marriott Residence Inn

7335 Wisconsin Ave.,
Bethesda, MD
(301) 718-0200, 1-800-331-3131
Includes continental breakfast
Includes internet access
All-suites hotel

Hyatt Regency Bethesda (directly above Metro)

One Bethesda Metro Center,
Bethesda, MD Wisconsin Ave. at Old Georgetown Road
301-657-1234 or 1-800-233-1234

The following accommodations are not on the NIH Shuttle route, but are convenient and accessible to NIH:

Bethesda North Marriott Hotel & Conference Center

5701 Marinelli Rd
Bethesda, MD 20852
5 Minute walk to White Flint metro, 5 minute metro ride to NIH

Hampton Inn

8728 Colesville Road,
Silver Spring, MD 20910
(301) 565-0005
Complimentary breakfast
Precor fitness studio and indoor pool
Only 4 blocks from the Silver Spring Metro Station

Hilton Silver Spring

8727 Colesville Road,
Silver Spring, MD 20910
(301) 589-5200
263 beautifully appointed sleeping rooms
Complimentary wireless Internet
Indoor pool and two on-site restaurants
4 blocks away from the Silver Spring Metro Station