Poor mommy has to deal with my strict diet when she’s never had to do that before. I don’t like it either but my doctor is mean and abusive.
#XLH
#raredisease
#crysvita
xlhnetwork.org
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#XLH
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#XLH
#raredisease
#crysvita
xlhnetwork.org
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The thing about XLH is it makes no sense. One week the left knee hurts, the next week the right ankle hurts.
#XLH
#raredisease
#crysvita
xlhnetwork.org
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Uuugghhhh!!! So annoying my knee is still giving me problems! Knee brace and rest all day when I have stuff I wanna do is no bueno!
#XLH
#raredisease
#crysvita
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I've been thinking about the challenges #XLH patients face once we hit 65, so we've got both XLH issues and regular geriatric issues. @michaellaurent.bsky.social do you know of any resources/overview of geriatric treatment for general population that would help me to understand the baseline basics?
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Nice little feature about an #XLH adult finally getting appropriate treatment in the UK: www.bbc.com/news/article... Wish they'd mentioned the patient advocacy group that helped make this possible. @xlh.bsky.social #Medsky
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Damn knee decided it’s had enough of me me.
#XLH
#raredisease
#crysvita
xlhnetwork.org
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Was supposed to have a fasting lab today but it snowed and I’m driving in that. I’ll do it tomorrow.
#XLH
#raredisease
#crysvita
xlhnetwork.org
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Got my medication ordered and set for delivery on Saturday!
#XLH
#raredisease
#crysvita
xlhnetwork.org
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#ForSale: 2007 #HarleyDavidson #Sportster #Custom #XLH #1200c - #Motorcycles - #FortLauderdale, FL at #Geebo
Please learn more at...
fortlauderdale-fl.geebo.com/vehicles/vie...
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Got the paperwork for a bridge dose! Signed it and sent it right off!
#XLH
#crystiva
#raredisease
xlhnetwork.com
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Of course United Health denied my medication.
#UnitedHealthSucks
#XLH
#raredisease
#crysvita
xlhnetwork.org
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Welp, doctor didn’t sign the new authorization in time and getting new insurance starting today. My next injection is scheduled for tomorrow and it’s getting missed and not sure when the new date will be.
#XLH
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Very frustrated with my flexibility. My arms don’t go straight up, I can’t sit with my legs crossed, and my hips don’t want to bend.
#XLH
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Tomorrow is a fasting lab. No food or drink before the lab work then I can eat and drink what I want!
#XLH
#raredisease
#crysvita
xlhnetwork.org
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Why don’t countries negotiate medical drug prices together. I find it insane that every country just negotiates a price that isn’t disclosed.
#xlh
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I just want everyone to know my hip hurts really really bad.
#XLH
#raredisease
#crysvita
xlhnetwork.org
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I had a good doctors visit! She’s happy with my progress and these old bones are healing!
#XLH
#raredisease
#crysvita
xlhnetwork.org
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Oh my gods, my nurse is going to be here in an hour and I need to pick up this apartment!
#XLH
#raredisease
#crysvita
xlhnetwork.org
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Really hope a new mattress and box spring will help with this back and hip pain. It's hard being old with a rare disease.
#XLH
#raredisease
#crysvita
xlhnetwork.org
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Ipofosfatemia legata all'X, primo bilancio e prospettive su linee guida ... LEGGI TUTTO #ipofosfatemia #Xlh #lineeguida #scienza #medicina
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I have lost 30lbs! Guess my doctor riding my ass about my diet and physical therapy has paid off. Also, my doctor is mean and abusive.
#XLH
#raredisease
#crysvita
xlhnetwork.org
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I am honestly say that fasting labs are my least favorite labs.
#XLH
#raredisease
#crysvita
xlhnetwork.org
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📢 New special issue of Calcified Tissue Int.: reviews on #osteomalacia, #XLH, #hypophosphatasia, #Gaucher, #Rett, Aromatase deficiency and more - plus the role of ERN BOND & EuRR-Bone in rare #bone disease care & research.
Read here ▶️ bit.ly/4ma8ge0
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Alrighty, I'm getting my energy back. Lets hope I don't crash and burn this afternoon!
#XLH
#raredisease
xlhnetwork.org
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