Rare Disease Chat - #rddchat - Feb 22 - 4pm

Twitter Chat - #rddchat - Feb 22nd @ 4pm est

Join people everywhere for this special occasion to support those who suffer from #rarediseases .

Twitter Hashtag: #rrdchat
Twitter Chat: #rddchat

FOR THE PATIENT:

T1: How have you been affected, or someone you love been affected by a Rare Disease?
T2: What has been your best source for support dealing with a Rare Disease?
T3: What has been your hardest pitfall to overcome with your Rare Disease?
T4: Who in your life has been the most inspirational person suffering from a Rare Disease?

FOR THE HEALTH PRACTITIONER:

T1b: How have you been affected as a professional by Rare Disease patient?
T2b: What resource(s) would you recommend for those with Rare Diseases?
T3b: What is the hardest pitfall you feel Rare Disease patients go through?
T4b: Please share a story of someone you know suffering with a Rare Disease?

LEARN HOW TO PARTICIPATE (Tutorial) »

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My Rare Disease Story:

My story starts back when I was around 18 years old, almost 20 years ago.

At the age of 18, I had my first DVT, deep vein thrombosis (blood clot) in my lower left leg. Doctors not thinking anything of it thought it was due to a back sprain that forced me to lay down for a long period. But once I started getting a clot about once a year thereafter, they started investigating further. Around when I was 21 I was diagnosed with Factor V Leiden - blood clotting disorder, prone to clotting for the rest of my life.

At this age, it was a scary thought, I knew people died from clots every single day. I later learned that clots are the 3rd leading killers globally. My mom was especially afraid for my well being and would constantly want me to be careful, but being extra careful all the time isn't living, it's like being in prison for the mind.

About 9 years ago, around 2006-2007 I was working one day and I had this reddish/black round spot over top of my outer ankle on my left leg. After a physical days' work, I came home, took off my work boots and this spot ripped off with my sock causing a great deal of pain, along with bleeding. Panicking, I went straight to the hospital. Once they were done with some extensive tests, no one had answers. I was given outpatient care for wound care and went on for a while.

The wound itself became larger, more inflamed and caused a great deal of pain. I was seen by a dermatologist who at the time was out of options for me, so I was sent to a leading dermatologist in Canada, He determined that these chronic wounds could be due to a condition called Rheumatoid Vasculitis, which after years of being on Prednisone proved to be false. Not knowing for sure what is wrong with you is the hardest life event someone has to go through, especially when answers are swirled around you for years. My family took it the hardest since all they wanted for me was some answers. Answers that might one day lead to helping to heal my wounds.

Any form of Vasculitis is rare, I was initially treated with Prednisone for almost two years with no effect. In the end, I didn't want to be on Prednisone anymore because of the major side-effects and the fact that my wounds were not healing what so ever. My specialists agreed, which brought the question, if it's not Vasculitis, it's possible that it's in fact an even more rare condition called: Livedoid Vasculopathy. There's very little documentation on this condition and even less on ways to treat LV. I've tried many treatments, including daily injections of Low-Molecular Weight Heparin and even a 6-week treatment using Hyperbaric Oxygen Tank therapy 2-hours a day to induce oxygen where it counts most. Unfortunately due to my underlining conditions (i.e. Factor V & LV), any treatment we've tried has had little to no effect.

Both my legs have been wrapped with Coban2 - 2 Layer Compression Bandages, Biatin IBU wound dressings and other dressing materials for almost 9 years straight. I've unfortunately become somewhat of a professional wound care specialist and try to educate and help others whenever I can. I've been to many wound care clinics giving presentations to new ER nurses and long-term wound care clients looking to be more independence with their own care from home.

One day at a mall, I was standing in line to get a coffee when all of a sudden, I felt a "pop" from my right leg. A few seconds later, my foot felt extremely warm. Looking down at my leg, I was shocked to see that my foot was now standing in a pool of blood. Stunned, confused and somewhat embarrassed, I started walking down the hall to try to reach an exit in order to hail a cab to go to the hospital. I had no idea I was leaving a trail of blood as I walked, and a few pedestrians followed my every step. I eventually collapsed from the blood loss and woke up with sitting on the floor to a kind man who had wrapped his shirt around my leg to prevent more blood loss.

This was probably one of the scariest moments in my life. I was surrounded by people who were helping me while I was sitting in a pool of blood and I didn't know a single person (still don't to this day). It amazes me when people say "the world is a mean place", well I've found that there are kind individuals everywhere I look. It's all in the mentality on how you chose to live which surrounds you with what you believe in.

To date, these conditions have changed my life drastically in ways most people can't fathom. We’ve also discovered after extensive tests that I was born with one kidney, my arterial system is extremely abnormal and I have an elongated bladder. Like most people suffering from these conditions, I am forced to take an assortment of medications to help with: blood clots, inflammation and pain. I have to be very careful of the type of foods I eat to enhance energy, healing and well being. My life has become very specific to daily tasks and necessary precautions.

One day I hope to meet a specialist willing to take a little risk here and there. At this point, I'm open to any suggestions that can provide me with some form of possibility for a better life.

Nowadays my time is dedicated to helping others, gaining knowledge and connecting with like-minded individuals who are an inspiration to myself and to all who know them.

Regards,
Martin R. Lemieux

@Martin_Lemieux - Tweet
@mlemieux - Mayo Clinic Connect - Founding Mentor

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Twitter Chat - #rddchat - Feb 22nd @ 4pm est

Join people everywhere for this special occasion to support those who suffer from #rarediseases .

Twitter Hashtag: #rrdchat
Twitter Chat: #rddchat

T1: How have you been affected, or someone you love been affected by a Rare Disease?
T2: What has been your best source for support dealing with a Rare Disease?
T3: What has been your hardest pitfall to overcome with your Rare Disease?
T4: Who in your life has been the most inspirational person suffering from a Rare Disease?

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