Urgent health care re Luce/Victoria

In June, Luce (Victoria) was diagnosed with a rare disease called Diffuse Pulmonary Lymphangiomatosis (DPL). This is a disorder of the lymphatic system, which causes accumulation of fluid in the chest (pleural effusions), and she has significant lung impairment from this and from lung disease (Non-Specific Interstitial Pneumonia).  There is no known cause.  Since her condition is complicated and multi-layered, treatment options are limited.  It is likely that Luce will eventually need a double lung transplant, but before this can be a good option, the pleural effusions need to be treated.

The doctors at University of Washington Interstitial Lung Disease Clinic—directed by a world-renowned lung disease specialist, Dr. Ganesh Raghu—referred Luce to a top lymphatic specialist, Dr. Maxim Itkin, at the Hospital of the University of Philadelphia.  The reasons why Luce’s doctors referred her there are:

·        UW doesn’t have dynamic contrast enhanced MR lymphangiogram

·        Philadelphia has advanced diagnostic and therapeutic techniques in the field of lymphatic disorders.

·        Dr Itkin and his team have specialized in adults and children with such lymphatic problems and Luce’s doctors believe that it makes a lot of sense to get their expert opinion.

·        The current treatment of high dose prednisone and chest tube is not sustainable, and to give Luce the best chance at some improvement or even stabilization, they strongly recommend exploring all options.

Dr. Itkin’s team believes that they can provide Luce with some insight to her condition, so Luce has appointments with Dr. Itkin’s team starting September 17th.

The biggest barrier is being able to afford to travel there.  Luce is not permitted to fly because she has an air space in her chest, and flying is unsafe and dangerous due to air pressure.  Therefore she needs to travel by train, which is much more expensive than flying.  Also, because the train trip is 3-days in each direction, she will have to miss 2-3 weeks of work, losing much pay. The total cost of travel, room and board, and offsetting the consequences of losing pay will be approximately $5,000. 

 Since the appointments are in September, the funds are needed urgently. Luce's situation is very serious and any help that can be provided will be very much appreciated as her quality of life is on the line. Please note the amount of $5000 is in US dollars.

 If you donate, Luce will mail you a postcard from Philadelphia!  If you have donated, please submit your mailing address at this link here:

https://goo.gl/forms/iXK2zpsXzR1XgDzj2

To learn more about DPL, here is an article:

https://rarediseases.org/rare-diseases/diffuse-pulmonary-lymphangiomatosis/
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Organizer

Claire Fleming LeBlanc 
Organizer
Port Moody, BC
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