I am a 50-something-year-old southern woman living with XLH, a metabolic bone disorder. I think of it as a disorder. Some medical types refer to it as a disease. My partner refers to it as a “medical situation.” I like that.
I am not disabled; however, some folks with XLH are disabled or become disabled as they age with XLH. So, that is why I do touch on the themes of disability in this blog.
I have primarily started this blog to support my fellow XLH-ers out there in the world. However, if you do not have XLH, you may enjoy reading it, since some of the themes I write about are universal–aging, for example, and dealing with healthcare, etc. I write about my own personal experiences and I do not offer medical advice. I’m one of those artistic-creative types of people, not one of those scientific-medical types who are more qualified to give out medical advice.
Go to www.xlhnetwork.org for more information on XLH.
banjogrrldiaries 
Hi
My name is Kelli Thomas and I have XLH also. Very interested in knowing what DR you use if any. Bio says you are in the south! I’m in KY.
My endocrinologist is Dr. Thomas Weber at Duke Hospital in Durham, NC. After the initial consultation, he corresponded with my family doctor on treatment, so that I wouldn’t have to drive back and forth to see him for ongoing treatment. He just wants to see me once a year and if/when my family doctor has questions, she consults with him.
I hope this helps!
would like plans for the limberjack thank u
I have tried to send you the plans, using the email address that is set up for your wordpress account and have received an error message that the address is not correct. Perhaps you will need to update your email address and resend your comment.
Thank you so much for your writing.
As a 34 year old single woman living at the more painful end of the XLH spectrum, I just discovered your blog through XLH Network and it has made me smile at least 10 times today… I needed that.
Thank you for reading my blog and I’m so glad it has made you smile! Sometimes, it’s the humor and irony of life and my experiences that help me get through tough moments and through the pain (and the emotions that come with it). I appreciate your comments! Take care.
Hi! Enjoyed reading your site, I am also an Xlh’er. I was diagnosed aged 2 and have been on the severe end of the Xlh spectrum most of my life. I am currently in the Burosumab study in Ireland and have seen drastic improvements in my pain and stiffness. So much so, the plan this April is to start weaning off the opioids and muscle relaxers I have been on for many years. I am currently blogging and writing about my experiences of growing up with a rare condition and am in the process of building a support blog/ web space at http://www.bandylegs.net It’s always great to connect with other rare disease sufferers and it always helps to share our experiences!
Thanks for reading! Are you still in the study or are continuing to take the burosumab?
My son has xlh the most severe kind hes 3 his teeth are falling out his bones break like glass they wanna do so many operations I’m trying to be as informed as possible but honestly it all scares me and I’m angry Everyday strangers tell me how cute his legs are I know they dont know its apart of a bigger medical problem but it bugs me any advice much apreciated
THANK YOU FOR READING! Do you know about the new drug, “Crysvita,” which has been approved by the FDA?