This is it!

Yesterday was another trip to the rheumatologist.  She is lovely, but hasn’t a bit of a clue why Meghan’s pain persists – often through the Celebrex, and ALWAYS without it.

She prescribes the medicine.  She examines her.  She sees no signs of Juvenile Rheumatoid Arthritis.

We speak for a little bit about Cowden’s Syndrome, her thyroid, and some of the other battles she has endured.  I ask the doctor if this could all be related.

dontknow

And she, candidly, honestly replies, “I don’t know.  I am starting to think there is some link, but I don’t know enough about your syndrome to put it together.”

Well at least she is honest.  But it is tiresome.  The traveling.  The doctors.  The lack of answers.

confused-face

So tonight, as I gave Meghan Tylenol after swim practice because the knee pain wouldn’t cut her a break.  We turned our thoughts to tomorrrow, and the 6th Annual World Rare Disease Day.

Rare disease logo 2013

This year’s motto is “Rare Disorders without Borders.”  It got Meghan and I to thinking about how nice it would be if doctors in all the countries would share their research.  There are so many rare diseases throughout the world.  So many more dire than our own.  There are so few people even looking for cures.  As she chats and gets to know a girl in Australia with Cowden’s, we can’t help but think about how much more voice each of our disorders would have “without borders.”

http://www.rarediseaseday.org/solidarity (This link takes you to a video on Rare Disease Day)

We talked a little about the newspaper article, and how it has helped spread awareness in out community.  We talked about all the ribbons we have made and distributed, and how nice it will be to see them tomorrow, and know we are not alone.  We have raised awareness of Rare Diseases, and we have only just begun.

http://www.silive.com/northshore/index.ssf/2013/02/staten_island_9-year-old_and_h.html (This is a link to our article from the SI Advance – February 20th)

Meghan, and her determination will see her dream of the “One of a kind” necklace with the Global Genes Project Logo, find its way into their new store.  She will see more and more people recognizing that “Hope is in our Genes,” and the denim ribbon gives an identity to those who too often have none.

Meg necklace

Tomorrow people will understand what it means to “Wear That You Care,” as they don their jeans locally and globally.

Rare_Disease_Day_Logo_2011-1024x968 2

My daughter, one of the compassionate people I know, is also the least judgmental.  She is kind.  Because she knows what it means to need kindness.  She is kind because she has faith, and wisdom gifted to her.  She is kind because, “You can’t tell by looking at someone if they are sick or in pain.”

chronic illness shirt

We share a genetic mutation.  I am her mother.  She is my role model and my hero.

She makes me a better person.

Wear your jeans – February 28th, 2013.

2 thoughts on “This is it!

  1. Psoriasis based arthris …hb-57 gene. Similar to Rhematoid..more rare with no rhem factor..anybody have siriosis? Just learned of this at MGH rhemo on this past Monday…

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s