THE BLOG

It's Not All Glamour!

13/11/2014 11:21 | Updated 12 January 2015

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We often think the grass is greener on the other side, but taking a closer look, one often finds that reality is a far cry from the glossy picture we've wrongly presumed. I have been an advocate for Gaucher (and Parkinson's) for some years now, having spoken at various organizations and venues, hoping to raise awareness and offer support to fellow sufferers and caregivers. My talks often vary depending on the audience, whether to patients and their families or those working in the medical field. Living with Gaucher disease, I take my role of campaigning quite seriously and find that putting a face, and a name along with a personal story, brings a rare disease like Gaucher to life.

Hearing how doctors fly around the world attending and giving lectures at various conferences may sound glamorous, but having just spoken at such a gathering in Barcelona, giving a short talk from the patient's perspective, I can assure you, this is far from the case. I was astonished at the high level of energy and enthusiasm that was literally buzzing, filling the air, as doctors, nurses and others in the medical field arrived from all around the world, their feet barely touching the ground as they dived straight in, putting long hours into giving lectures, listening to others, and attending workshops filled with lively debate. Being in such an environment, around some of the best scientific and medical minds specializing in Gaucher, was a privilege, and I was thrilled to have been given the opportunity to experience such an event.

I take my hat off to the organizers, who made everything run so smoothly, like a well-oiled machine, on call every minute of the day and throughout the evenings, greeting everyone with a smile on their face. What went on behind the scenes, must have been like a military operation, great planning and taking care of the smallest of details was a marvel to see. It all came together as a highly professional and successful event.

Bringing people together from around the globe with a common goal is definitely a great idea, no matter what the disease. Sharing information, in a stimulating environment, discussing new knowledge and spreading awareness of Gaucher, a rare disease, appropriately held during October, which is "Gaucher Awareness Month" was quite an eye opener. The organizers and attendees have my greatest respect, for this occasion was a normal part of their lives, but for someone like me, it took several days of rest to recover from the journey and excitement.

So the next time you hear your doctor's appointment has been rescheduled or cancelled, due to your physician flying off to a conference abroad, you may be a little more understanding, for a doctor's job is far from a 9-5 position, it is a vocation and for some it's 24/7. The dedication and care of these individuals is plain to see, and my participation is something I will remember for the rest of my life.

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