Achondroplasia, Limb Lengthening

Lights, Camera, Action

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Last week I was in Baltimore (surprise, surprise) for another appointment with Dr. Standard but this time it was more planned than it was scheduled – if that makes sense…it does to me. Recently, I was approached by a filmmaker to be part of an upcoming documentary that will share my experience with achondroplasia and limb lengthening. It was great being able to work with the film crew and Dr. Standard, as well as comparing both of our viewpoints and reflecting on past surgeries and appointments. There aren’t many more details that I can provide at this time but stay tuned for further updates when the time comes. For my most recent follow-up with Dr. Standard click here.

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Achondroplasia, Limb Lengthening, Travel

Fundacíon ALPE Acondroplasia 2018

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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 […]

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Achondroplasia, Limb Lengthening

Another lengthening?

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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 […]

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