Connect with others who understand this condition
We're a small group sharing practical experiences and what we've learned living with IL.
Share your experiences and learn from others in our private email community
We'll add you to our private Gmail group for ongoing discussions
Low-fat meals and recipes that IL patients actually use. Real experiences with what helps and what doesn't.
What treatments, medications, or approaches have helped manage symptoms. Personal experiences only.
Which doctors or centers understand IL. How to communicate with healthcare providers about this rare condition.
Where to find MCT oil, special foods, supplements. Daily life management strategies that actually work.
We're from different countries. When language is a barrier, we use tools like DeepL to communicate.
Understanding from people who live with the same challenges. Sometimes that's what helps most.
Intestinal Lymphangiectasia (IL) is a rare disorder where dilated lymph vessels in the small intestine leak protein-rich lymph fluid into the bowel, leading to protein loss and various symptoms.
Also known as: Protein Losing Enteropathy (PLE), Primary Intestinal Lymphangiectasia (PIL)
IL is rare enough that many doctors haven't seen it before. Connecting with other patients and families means:
We share what we've learned through living with IL. Every person's experience is different, but practical knowledge helps.
We're not trying to replace medical care - we're sharing real-world experience living with this condition.
Based on shared experiences, many find help with:
This is a private initiative by IL patients and families. We share our experiences to help others navigate this condition.
This community does not replace professional medical care. We complement it by sharing practical, real-world experience.