If you were keeping up with me on social media last week then you probably know that I was in Spain for the sixth International Congress on Achondroplasia and other Bone Dysplasias. This three-day event is put on every four years by Fundacíon ALPE Acondroplasia. ALPE is such a wonderful organization that provides information, gives support, sponsors medical advice and creates bonds for families and children with achondroplasia and other forms of rare bone dysplasias. I had the honor of meeting Estefánia and Susana earlier this year while in Maryland for the Joint Pediatric Advisory Committee and Endocrinologic and Metabolic Drugs Advisory Committee Open Public Hearing. This was my first time attending the ALPE Congress and I can say first hand that in all the ways it’s similar to a Little People of America National Conference or Regional it’s also very different. Like at LPA, they had world-renowned medical professionals and dwarfism specialists […]
If you don’t already know, October is dwarfism awareness month & if you weren’t aware, I have dwarfism – obviously. I know it’s hard to tell *sarcasm* So I thought I’d participate this month and share a bit here and there about my thoughts, feelings, and opinions about it all – so let’s go ~ I was born with the most common form of dwarfism, achondroplasia and I’m going to be real here and say that having dwarfism IS NOT JUST BEING SHORT 🤜🎤💥 *mic drop*
Ok so the title may have been a little clickbait – sorry 😂 – TBH Dr. Standard and I did talk about it (I’ll get to that later) You probably already know but I was in Baltimore last week. It’s been a while since I’ve seen Dr. Standard and I’ve had a few things that I have been wanting to discuss with him in person – it was also Save-A-Limb weekend. The appointment went great. One of my main reasons for this appointment was because I turn 25 in a couple of months which means I only have one year left on my dad’s insurance plan – so if any tweaks need to made I would like to do it sooner rather than later (for insurance and age reason). BURNING QUESTION – am I doing another lengthening? No, I’m (probably) not. However, we did discuss it and I’ll be honest I have […]
Hello, September…or should I say Septembarre? 😉 It’s officially been a month and a half since I have started Pure Barre and I am LOVING IT!! Even though it’s only been a little over a month, Pure Barre has been the best thing to happen to me.