News & Events

Our voices need to be heard, a letter to the NIH and AMA from Michelle

Dr. Francis Collins and Dr. James Madara,

Before I wrote this letter I wrote my suicide note. I now know it’s not a matter of if, it’s a matter of when. I am 33. A single mum. I do not want to die but I cannot continue my ‘life’ like this. I am no longer living, merely existing. I am unable to tell you exactly what is wrong with me despite living this way for the last 15 months - all I can say is I have something wrong with my lymphatic system.

Rewind 15 months ago and I was a fit, healthy, young woman with a bundle of energy, the world at my feet so to speak; I was thriving. After surgery for an incarcerated femoral hernia I developed chylous ascites - the surgeons say the fluid was there when they cut me open, I was never told of any fluid. Simply sewn back up and sent home. After numerous visits back to the hospital because I knew something was wrong I was finally admitted to a second hospital (2 months after the initial surgery) where they sampled the fluid and discovered it was chylous ascites. I was then sat down (on my own as we were in the midst of a pandemic) and told they thought I had cancer. Without running a single test I was hit with this disastrous statement. At the time, this was devastating but I now wish it was something as ‘simple’ as cancer because at least then I’d have a team who knew what they were dealing with. I’ve also come to learn after speaking with cancer patients that this condition is actually worse than dealing with cancer.

In this past year, I have spent more time in hospital than I have at home with my son. I’ve had so many tests, scans and operations I can no longer keep count but every single time I am hit with “we just don’t know, the lymphatic system is skimmed over in medical school” - why is this? How is it possible that such a large, complicated system is simply skimmed over in medical training? Why are patients being told from people in charge of their care (and essentially their life) that they know more about the topic than they do? Why are there no specialists? Why is there barely any research out there? I’ve lost count of the amount of times I’ve heard the words “you know more about this than I do”. I have met with consultants who actually think I am a doctor, which is terrifying.

Most days I’m unable to leave my bed as I’m so uncomfortable and my organs are now prolapsing so this makes every day things like walking an impossible task. I’ve had to give up primary care of my son, my career which I worked so hard for and my home because I can no longer pay my bills or take care of myself. Where is the mental health support for patients? I attempted my own life on one of my numerous hospital admissions back in March and was caught by both a nurse and doctor, yet I’ve still not received any form of support. Conditions of the lymphatic system are life changing, crippling & debilitating yet as patients we are completely alone; enigmas of the medical world yet there are millions of us suffering. Things need to change, more training needs to be available, we need specialists, we need support networks, we need people to fight for us.

More needs to be done, so much more. I hope whoever this email reaches can start to make these changes – there are so many of us out there suffering with lymphatic issues yet our voices are silenced within the medical world – this needs to change.