|Medical Terms||Other Names||
|80%-99% of people have these symptoms|
|30%-79% of people have these symptoms|
Swollen lymph nodes
Cancer of lymphatic system
Increased spleen size
|5%-29% of people have these symptoms|
Low number of red blood cells or hemoglobin
|Percent of people who have these symptoms is not available through HPO|
|Decreased circulating IgG level||0004315|
Decreased immune function
|Increased IgM level||0003496|
High lymphocyte count
Low blood cell count
Recurrent sore throat
|Reduced natural killer
Low platelet count
If you need medical advice, you can look for doctors or other healthcare professionals who have experience with this disease. You may find these specialists through advocacy organizations, clinical trials, or articles published in medical journals. You may also want to contact a university or tertiary medical center in your area, because these centers tend to see more complex cases and have the latest technology and treatments.
If you can’t find a specialist in your local area, try contacting national or international specialists. They may be able to refer you to someone they know through conferences or research efforts. Some specialists may be willing to consult with you or your local doctors over the phone or by email if you can't travel to them for care.
You can find more tips in our guide, How to Find a Disease Specialist. We also encourage you to explore the rest of this page to find resources that can help you find specialists.
Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.
Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.
Living with a genetic or rare disease can impact the daily lives of patients and families. These resources can help families navigate various aspects of living with a rare disease.
The XLP Research Trust Symposium 2018
Monday, October 29, 2018
Location: London, England
Description: This 5th XLP symposium for researchers and clinicians will be held on the 29th October 2018 in Central London. Applications to present a paper at the event must be received by Friday June 22nd. Registration is £50.00 (plus a small booking fee). The symposium will be held at SAS office near Liverpool Street station, on the edge of the City of London and Shoreditch.