KMS8P5K78ZNN Blogging is an edgy new avenue for governmental communications with its citizenry. While my Google search on “Federal blogging” turned up numerous examples of productive use of this media throughout the Fed, I can’t find any other FDA office that’s doing it. Nevertheless, our office has a rich tradition of being publicly accessible, and the new administration has made FDA transparency a key institutional value, so I’m willing to sign on. Accountability and accessibility are core values here at OOPD. We serve the rare disease community in “all things orphan”, assuring that matters of concern to patients and other stakeholders are heard and reckoned with by our larger regulatory community.
So I’m happy to sign up and open this door. I can promise to make at least one post per month, but like many of you I am wary of internet timesinks: Facebook, Twitter, Ebay, Craigslist, Blogs, not to mention our own email inboxes (personal and business) offer potential for both productivity efficiencies and wastages. But let’s try it: NORD and EUORDIS are strong partners in our shared mission to provide access to new effective therapies for people with rare diseases and if they’re sponsoring this venue, well, I’m proud to be invited to contribute.
Tim
I have a new blog Be kind Rewind on blogger.com. I have had Parry Romberg Syndrome since age 11. I am now 46 and a mother of 2 healthy girls.
I write true stories about dealing with this syndrome in my teens and feel this can help other young patients deal with peer pressure, stares, self image, and cope with the emotional stress this syndrome creates. I am proud to be a advocate on Facebook “causes” with NORD and I have personally helped many find reputable doctors including John Weston Seibert who I referred to many members on The Romberg Connection support group. I am happy to report this fine doctor who is one of a few that specializes in the vascular flap procedure. I am one of the lucky ones and have no side effects. I want you patients to know they can live a normal happy life living with Parry Romberg Syndrome. Advocacy and research is needed to find a cure.
write your comment here… I am trying to use my blogs and post my story on every social network. I started a “cause” page on Facebook for Parry Romberg Syndrome. Nord also posted on this page to help support my cause. I have joined Inspire a group for patients with scleroderma and similar illnesses. I have posted my entire story on the Romberg Connection Support group three years ago and made a major contribution by refering Dr. John Siebert for Vascular Flap transplants. Many members went to see him and he performed numerous procedures on many people I know with Parry Romberg Syndrome. The problem is I am doing what I can to help mainly young teen girls who are the most prone to PRS because I know what they are experiencing firsthand. Very few want to tell their story because it is too painful and personal. I can still feel the knife going through my heart when someone called me “scar face” in front of a whole class. I swallowed the anger the shame, the pain from the world and got strength from my Father, Manny Rick, who never let me drown in my own self pity. I stood up for myself and fought back by being myself that person was still there. My face didn’t define me. Like a car in a accident I was “fixed” and by 16 I was just another pretty girl who was catching up on things I missed. Like a first kiss. I dreamed about that moment, but when it happened it was no big deal. Having PRS showed me what was important in life and that was a very big deal. I vowed then to spend my life helping others like me and I will continue to do so. I am not a rockstar just a person with a big heart.
It is painful to write about a disease that I really didn’t know would have lifelong emotional issues that I just recently realized will never totally go away. However, that made it even more crucial to me to continue to blog until the public knows about orphan rare diseases like Parry Romberg Syndrome. I am using my free time usually late at night, to explore and research foundations, support groups and social networks and leave a comment on each site about Parry Romberg Syndrome and other rare diseases. I am trying to use my story as evidence there is hope, support and people all over the world who care, really care.
write your comment here…this girl has extreme courage with what she has lived with through her whole life and her father tried to find a cure for what she had of a child and how through her growing years to save herself that beauty comes from within keep writing shes a great writer she should write a book
Dear David,
I am writing and wiping tears from my eyes when I read your comment about my writing these blogs.
My husband actually found your comment and showed it to me. It meant more to me than I possibly can express. I really don’t care how many people are reading my personal posts. I often tell people who ask me why I am sharing such intimate details with the public and I simply say “If I can make a difference in only one person’s life, It was worth it.”
My mother made me promise years ago to never stop writing. I have been writing my whole life and have a degree in Journalism from Hofstra University 1985 and this is the first year I was able to go public for obvious reasons, I was ready.
Best wishes, Cheryl Rick Klein