How can you help our CDG community? Is easy! Share among your social media and other channels the information we make available within this section and website. This raises awareness, accelerates diagnosis, and secures better care and management for our CDG children and adults!
Our community is in a relentless pursuit of therapies!
Non - nutritional replacement therapies for CDG
What is immunoglobulin therapy?
Immunoglobulins (antibodies) are glycoproteins (proteins with attached sugars). Antibodies are molecules present in our blood which help protect your body from diseases, namely by fighting infections. To learn more about immunoglobulin therapies, the International Myeloma Foundation has an educational initiative #AskDrDurie where Chairman Dr. Brian Durie discusses how Intravenous Immunoglobulin is being used as a treatment option for another condition named multiple myeloma. This is not specific for CDG but may help you.
What patients can intravenous immunoglobulin treatments help?
Immunoglobulin therapy can be used as a management strategy for CDG with immune-related symptoms, mainly hypogammaglobulinemia. It has been specifically studied for people living with GNE-CDG.
How can intravenous immunoglobulin treatments help people living with GNE-CDG?
This CDG is characterized by a progressive muscle weakness due to defects in the GNE gene that is crucial for the production of a diverse family of sugars - the sialic acids. Thus, you may find that this condition is referred to as neuromuscular or CDG. Watch the video below to learn about what is GNE Myopathy.
Immunoglobulins are important because they can act as an external source of sialic acids, as they have a high load of these sugars. In GNE-CDG there is a lack of sialic acids, hence intravenous (IV) immunoglobulin treatment can help increase sialic acid levels in this CDG. However, no consistent clinical improvements were found possibly because it requires longer-term treatment.
Publications in CDG are constantly growing. We have selected articles of special interest for you, see below. Not all are open access, thus if you wish to access the full information, please contact us at https://worldcdg.org/contact
Keep in mind, you are not alone. Though Congenital Disorders of Glycosylation (CDG) are categorized as “rare” there is an amazing community at your fingertips working day and night to improve the lives of many people living with CDG and their family members. We want you to know everything that is available about therapies in lay language, but we suggest you enter into it at your own pace and comfort level.
Vanessa Ferreira and Sandra Brasil (CDG & Allies FCT, NOVA University, World CDG Organization and Portuguese Association for CDG). Ines Santos, Tiago Martins, Madalena Raposo from Sci and Volunteer Program Nova School of Science and Technology 2021. Ana Sofia Rodrigues (content management, CDG & Allies FCT, NOVA University, World CDG Organization and Portuguese Association for CDG).
The Site cannot and does not contain medical or health advice. The information is provided for general informational and educational purposes only and is not a substitute for professional advice.
Accordingly, before taking any actions based upon such information, we encourage you to consult with the appropriate professionals. We do not provide any kind of medical or health advice. The use or reliance of any information contained on this site is solely at your own risk.