This community is a space for those living with a condition or caring for someone with a condition to share their experiences.
Topics discussed in this forum include:
- Family history and how it impacts you
- Role of foods/nutrition in managing your condition
- Staying up-to-date on conditions
- Devices/Apps to manage health
- Treatment decisions
- Disease management programs
- Finding support
WHAT OUR MEMBERS ARE SAYING
“I have a very rare disease (only 250,000 people in the world have been diagnosed with it)so it is extremely hard to find any helpful information. Luckily, there is a strong non-profit organization that is spearheading educating the public, patient and their families and caregivers. They are spearhead research in the area of finding a cure. They are an excellent resource.
Surprisingly the other excellent source of information are the drug manufacturers of the only know treatment (immunoglobulin infusions – a blood protein found in plasma that is responsible for making antibodies which attack germs in the body) for the disease, Congenital Hypogammaglobulinemia – an immune deficiency disorder.
My dream is to find a local ‘team’ of doctors to work with. Right now I see a Primary Care Physician who is bright and open to learning; but, he doesn’t know much about my disease. I see him for everything since I need referral’s to specialists. My main resource is the Oncologist/Hematologist who diagnosed me. He understands the dosing of infusions and what pre-medications need to be given. He arranges all of those. But, he is a highly in demand specialist so I can’t go to him for colds, et.al. Which is the dilemma. I can die from a cold if it turns into pneumonia. Hence, the need for a ‘team’ of knowledgeable doctors who can work to together for the greater good.” – Christine