Immunodeficiency with thymoma

How many people have Good syndrome?

Good syndrome occurs in individuals all over the world, although approximately half of the cases described in the literature have been in Europe. An article published in 2010 stated that as of that year, there were less than 60 reported cases of Good syndrome worldwide. Some other published statistics related to the occurrence of Good syndrome include the following:

  • Good syndrome occurs in 3-6% of individuals with thymomas.
  • In the United States, the incidence of thymoma is approximately 0.15 cases per 100,000, and this tumor can be found in up to 10% of individuals with adult-onset hypogammaglobulinemia. On the other hand, the incidence of hypogammaglobulinemia is between 6–11% in individuals with thymoma.
  • It has been estimated that Good syndrome is the underlying cause of immunodeficiency in 1% to 2% of individuals with primary antibody deficiency who are on immunoglobulin replacement treatments.

Last updated on 05-01-20

Are there any support resources for individuals with Good syndrome?

We are unaware of organizations that provide services or supportive resources that focus exclusively on Good syndrome; however, we have identified several groups that focus on immunodeficiencies in general. To view this information on our Web site, click here.

Last updated on 05-01-20

What is the long-term outlook for people with Good syndrome?

The long-term outlook (prognosis) for individuals with Good syndrome is believed to be worse than for those with other immunodeficiencies. The outlook is affected more by the severity of associated infections, hematologic complications, and autoimmune diseases, rather than by the behavior of the thymoma. In addition, the course of the condition may be more severe for individuals who require immunosuppressive drugs for associated autoimmune complications.

One single center review of individuals with primary antibody deficiency, spanning 20 years, reported that 70% of individuals with Good syndrome were still living 5 years after the diagnosis. At 10 years, only 33% were still living. Another review of 152 cases found significant overall mortality (46%) associated with the condition.

Last updated on 05-01-20

Name: Jeffrey Modell Foundation JMF 780 Third Ave
New York, NY, 10017, United States
Fax : 212-764-4180 Email: info@jmfworld.org Url: http://www.info4pi.org/ JMF is a global patient organization devoted to early and precise diagnosis, meaningful treatments, and ultimately, cures - through clinical and basic research, physician education, patient support, advocacy, public awareness and newborn screening.
Name: International Patient Organization for Primary Immunodeficiencies IPOPI Rock Bottom, Trerieve Downderry
PL11 3LY
United Kingdom
Phone: 44-01503-250-668/961 Email: Info@ipopi.org Url: https://ipopi.org
Name: Immune Deficiency Foundation 110 West Road, Suite 300
Towson, MD, 21204, United States
Toll Free: 1-800-296-4433 Fax : +1-410-321-9165 Email: https://www.primaryimmune.org/services/ask-idf/ Url: https://www.primaryimmune.org/
Name: Canadian Immunodeficiencies Patient Organization (CIPO) 25 La Grave St Winnepeg, MB
R3V 1J1, Canada
Phone: 877-262-2476 (toll-free) Fax : 866-942-7651 (toll-free) Email: http://www.cipo.ca/#contact Url: http://cipo.ca
Name: Immune Deficiencies Foundation Australia PO Box 969 Penrith NSW 2751
Australia
Phone: 800-100-198 Email: info@idfa.org.au Url: http://www.idfa.org.au/

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