What an experience! I was lucky enough to have VEDA (Vestibular Disorders Association) nominate me to represent the vestibular community at the NORD (National Organization of Rare Disorders) gala in Washington, D.C. It’s been a little over a month since my return from DC.
Here’s a few highlights:
- Stumbled upon two women living with vestibular dysfunctions. One gal has battled motion sickness since childhood, and the other suffers from Meniere’s disease. Both gals work for the airline I was traveling with. Small world!
- I met Tom, a fellow dizzy friend I connected with via the blog! He took a
trainbus from Ohio to DC just so we could hang out. It was comforting to spend time with someone that “gets it”!
- I survived a 5 hour flight… both ways!
- I attended my first gala, where 250+ supporters of the rare disease community heard the word “vestibular” for the first time!
- My husband and I were invited by a member of Congressman Fred Uptons staff to have a private tour of The Capital.
- I dined at more than one busy restaurant in a single week…and survived.
- I made it up the Lincoln memorial steps! (Tip: Use the side rails and your walking stick.)
- I walked a mile, to and from the local grocery store, on congested streets by myself!
Exciting experiences still possible
I NEVER imagined experiencing any of the aforementioned highlights post vestibular dysfunction.
Traveling to Washington DC was my first major trip away from home since that initial life robbing vertigo symptom presented itself.
It’s been a harsh 9 years living with a vestibular dysfunction. Majority of my time has been spent behind the four walls of my room. I’ve dreamed of once again having life altering experiences, but assumed exciting travel was no longer part of my story.
I now believe in possibility. Courage now has tangible meaning. I can say with confidence that life can still paint meaningful highlights, in spite of chronic illness.
Always prepare for a little gloom
I have to acknowledge there was gloomy side to this trip. I quickly realized how isolated the vestibular community is from the remainder of the chronic illness population. We technically don’t qualify as a rare disorder. According to the NORD website “In the U.S., a disease is considered rare if it is believed to affect fewer than 200,000 Americans.” I’ve read estimates as high as 69 million people in the US have experienced a vestibular dysfunction. Also, majority of the rare disorders acknowledged at the NORD gala were traced back to a genetic abnormality. Once a genetic abnormality is identified, a drug protocol treatment plan becomes a possibility. Vestibular dysfunction, on the other hand, covers an array of disorders. Folks are left with disabling symptoms that may or may not stem from a genetic abnormality. We’re often living with subjective symptoms that don’t have an identified source. Hence, this may be a reason why updated testing and treatment options are minimal.
I can’t thank NORD enough for taking us in and welcoming vestibular disorders to the table!
This trip made it clear that WE MUST support VEDA. Effective treatment options will present once we have access to updated diagnostic testing. We will have access to technologies when awareness becomes so overwhelming we can’t be ignored.
Never ease up on your grip of hope
I left DC in hopeful spirits. I believe technology and time will collide producing effective treatment options and cures for folks battling chronic dizziness and vertigo.
I leave you with this. Don’t lose hope. Year one I was so disoriented I could hardly circle my neighborhood block! Yes, technically I’m now back behind the four walls of my room, but at least I can hold onto the hope that future positive life experiences are possible. I can’t say it gets better, but I can say you will learn to adapt and survive.
PS: Thanks to NORD and VEDA for this life changing experience!