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
#XLH
#raredisease
#crysvita
xlhnetwork.org
February 15, 2026 at 3:26 AM
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
#XLH
#raredisease
#crysvita
xlhnetwork.org
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
#XLH
#raredisease
#crysvita
February 1, 2026 at 6:09 PM
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
#XLH
#raredisease
#crysvita
January 21, 2026 at 3:44 AM
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
#XLH
#raredisease
#crysvita
xlhnetwork.org
January 19, 2026 at 1:05 PM
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
#XLH
#raredisease
#crysvita
xlhnetwork.org
December 18, 2025 at 7:07 PM
Of course United Health denied my medication.
#UnitedHealthSucks
#XLH
#raredisease
#crysvita
xlhnetwork.org
#UnitedHealthSucks
#XLH
#raredisease
#crysvita
xlhnetwork.org
December 4, 2025 at 10:17 PM
Of course United Health denied my medication.
#UnitedHealthSucks
#XLH
#raredisease
#crysvita
xlhnetwork.org
#UnitedHealthSucks
#XLH
#raredisease
#crysvita
xlhnetwork.org
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
#XLH
#raredisease
#crysvita
xlhnetwork.org
Home Page - XLH Network
xlhnetwork.org
November 17, 2025 at 9:11 PM
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
#XLH
#raredisease
#crysvita
xlhnetwork.org
I just want everyone to know my hip hurts really really bad.
#XLH
#raredisease
#crysvita
xlhnetwork.org
#XLH
#raredisease
#crysvita
xlhnetwork.org
Home Page - XLH Network
xlhnetwork.org
November 7, 2025 at 12:04 AM
I just want everyone to know my hip hurts really really bad.
#XLH
#raredisease
#crysvita
xlhnetwork.org
#XLH
#raredisease
#crysvita
xlhnetwork.org
#RARE Ultragenyx Announces Sale of a Portion of Future North American Royalties on Crysvita® (burosumab) for $400 Million to OMERS Life Sciences
https://www.stocktitan.net/news/RARE/ultragenyx-announces-sale-of-a-portion-of-future-north-american-nhe3w8jwvl1u.html
https://www.stocktitan.net/news/RARE/ultragenyx-announces-sale-of-a-portion-of-future-north-american-nhe3w8jwvl1u.html
Ultragenyx Announces Sale of a Portion of Future North American Royalties on Crysvita® (burosumab) for $400 Million to OMERS Life Sciences
Bolsters balance sheet with non-dilutive capital at an attractive cost Beginning in January 2028 OMERS will receive an additional 25% of the North American Crysvita® royalty interest capped at 1.55 times the purchase price Proceeds to fund four expected launches, setting the company up for the next
www.stocktitan.net
November 4, 2025 at 9:01 PM
#RARE Ultragenyx Announces Sale of a Portion of Future North American Royalties on Crysvita® (burosumab) for $400 Million to OMERS Life Sciences
https://www.stocktitan.net/news/RARE/ultragenyx-announces-sale-of-a-portion-of-future-north-american-nhe3w8jwvl1u.html
https://www.stocktitan.net/news/RARE/ultragenyx-announces-sale-of-a-portion-of-future-north-american-nhe3w8jwvl1u.html
I had a good doctors visit! She’s happy with my progress and these old bones are healing!
#XLH
#raredisease
#crysvita
xlhnetwork.org
#XLH
#raredisease
#crysvita
xlhnetwork.org
Home Page - XLH Network
xlhnetwork.org
October 10, 2025 at 7:13 PM
I had a good doctors visit! She’s happy with my progress and these old bones are healing!
#XLH
#raredisease
#crysvita
xlhnetwork.org
#XLH
#raredisease
#crysvita
xlhnetwork.org
ΕΟΦ: Κίνδυνος σοβαρής υπερασβεστιαιμίας σε ασθενείς που παίρνουν το φάρμακο «Crysvita» #rthess
ΕΟΦ: Κίνδυνος σοβαρής υπερασβεστιαιμίας σε ασθενείς που παίρνουν το φάρμακο «Crysvita»
Ανησυχία προκαλεί το γεγονός ότι στους ασθενείς που έλαβαν θεραπεία με φάρμακο που περιέχει την ουσία burosumab, παρατηρούνται αυξήσεις στο ασβέστιο ορού και/ή της παραθυρεοειδούς ορμόνης, σύμφωνα με ανακοίνωση του ΕΟΦ. Η ιαπωνική φαρμακευτική εταιρεία Kyowa Kirin, σε συνεργασία
dlvr.it
October 10, 2025 at 1:29 PM
ΕΟΦ: Κίνδυνος σοβαρής υπερασβεστιαιμίας σε ασθενείς που παίρνουν το φάρμακο «Crysvita» #rthess
Ο ΕΟΦ προειδοποιεί για κίνδυνο σοβαρής υπερασβεστιαιμίας σε ασθενείς που παίρνουν το φάρμακο «Crysvita» – Περιέχει την ουσία μπουροσουμάμπη
https://nicemagazine.gr/o-eof-proeidopoiei-gia-kindyno-sovari/
https://nicemagazine.gr/o-eof-proeidopoiei-gia-kindyno-sovari/
October 10, 2025 at 11:53 AM
Ο ΕΟΦ προειδοποιεί για κίνδυνο σοβαρής υπερασβεστιαιμίας σε ασθενείς που παίρνουν το φάρμακο «Crysvita» – Περιέχει την ουσία μπουροσουμάμπη
https://nicemagazine.gr/o-eof-proeidopoiei-gia-kindyno-sovari/
https://nicemagazine.gr/o-eof-proeidopoiei-gia-kindyno-sovari/
Ο ΕΟΦ προειδοποιεί για κίνδυνο σοβαρής υπερασβεστιαιμίας σε ασθενείς που παίρνουν το φάρμακο «Crysvita» – Περιέχει την ουσία μπουροσουμάμπη
https://agrinio24.gr/o-eof-proeidopoiei-gia-kindyno-sovaris-yperasvestiaimias-se-astheneis-pou-pairnoun-to-farmako-crysvita-periechei-tin-ousia-bourosoumabi/
https://agrinio24.gr/o-eof-proeidopoiei-gia-kindyno-sovaris-yperasvestiaimias-se-astheneis-pou-pairnoun-to-farmako-crysvita-periechei-tin-ousia-bourosoumabi/
October 10, 2025 at 11:35 AM
Ο ΕΟΦ προειδοποιεί για κίνδυνο σοβαρής υπερασβεστιαιμίας σε ασθενείς που παίρνουν το φάρμακο «Crysvita» – Περιέχει την ουσία μπουροσουμάμπη
https://agrinio24.gr/o-eof-proeidopoiei-gia-kindyno-sovaris-yperasvestiaimias-se-astheneis-pou-pairnoun-to-farmako-crysvita-periechei-tin-ousia-bourosoumabi/
https://agrinio24.gr/o-eof-proeidopoiei-gia-kindyno-sovaris-yperasvestiaimias-se-astheneis-pou-pairnoun-to-farmako-crysvita-periechei-tin-ousia-bourosoumabi/
Ο ΕΟΦ προειδοποιεί για κίνδυνο σοβαρής υπερασβεστιαιμίας σε ασθενείς που παίρνουν το φάρμακο «Crysvita» – Περιέχει την ουσία μπουροσουμάμπη
https://e-press.gr/o-eof-proeidopoiei-gia-kindyno-sovaris-yperasvestiaimias-se-astheneis-pou-pairnoun-to-farmako-crysvita-periechei-tin-ousia-bourosoumabi/
https://e-press.gr/o-eof-proeidopoiei-gia-kindyno-sovaris-yperasvestiaimias-se-astheneis-pou-pairnoun-to-farmako-crysvita-periechei-tin-ousia-bourosoumabi/
October 10, 2025 at 11:31 AM
Ο ΕΟΦ προειδοποιεί για κίνδυνο σοβαρής υπερασβεστιαιμίας σε ασθενείς που παίρνουν το φάρμακο «Crysvita» – Περιέχει την ουσία μπουροσουμάμπη
https://e-press.gr/o-eof-proeidopoiei-gia-kindyno-sovaris-yperasvestiaimias-se-astheneis-pou-pairnoun-to-farmako-crysvita-periechei-tin-ousia-bourosoumabi/
https://e-press.gr/o-eof-proeidopoiei-gia-kindyno-sovaris-yperasvestiaimias-se-astheneis-pou-pairnoun-to-farmako-crysvita-periechei-tin-ousia-bourosoumabi/
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
#XLH
#raredisease
#crysvita
xlhnetwork.org
Home Page - XLH Network
xlhnetwork.org
October 8, 2025 at 5:42 PM
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
#XLH
#raredisease
#crysvita
xlhnetwork.org
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
#XLH
#raredisease
#crysvita
xlhnetwork.org
Home Page - XLH Network
xlhnetwork.org
October 6, 2025 at 3:40 PM
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
#XLH
#raredisease
#crysvita
xlhnetwork.org
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
#XLH
#raredisease
#crysvita
xlhnetwork.org
Home Page - XLH Network
xlhnetwork.org
October 4, 2025 at 10:16 PM
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
#XLH
#raredisease
#crysvita
xlhnetwork.org
I am honestly say that fasting labs are my least favorite labs.
#XLH
#raredisease
#crysvita
xlhnetwork.org
#XLH
#raredisease
#crysvita
xlhnetwork.org
Home Page - XLH Network
xlhnetwork.org
September 23, 2025 at 4:48 PM
I am honestly say that fasting labs are my least favorite labs.
#XLH
#raredisease
#crysvita
xlhnetwork.org
#XLH
#raredisease
#crysvita
xlhnetwork.org
And i could drop it on that cardboard box edge every. single. time.
It's honestly a bummer genetic rickets robbed me of that.
But that's also why we need research that leads to things like Crysvita so kids today don't have to go through what I did.
It's honestly a bummer genetic rickets robbed me of that.
But that's also why we need research that leads to things like Crysvita so kids today don't have to go through what I did.
Being autistic and thinking in pictures is WHY I used to be able to repeat my body mechanics so exactly and visualize myself outside myself throwing so I could drop a slider "off a table" where it landed on top of the edge side of a flipped up box in the backyard.
Bet I could've outpitched RFK Jr.
Bet I could've outpitched RFK Jr.
April 17, 2025 at 2:36 AM
And i could drop it on that cardboard box edge every. single. time.
It's honestly a bummer genetic rickets robbed me of that.
But that's also why we need research that leads to things like Crysvita so kids today don't have to go through what I did.
It's honestly a bummer genetic rickets robbed me of that.
But that's also why we need research that leads to things like Crysvita so kids today don't have to go through what I did.
Thank you 😁 Im just glad I could do it, before Crysvita that would have been almost impossible!
March 8, 2025 at 10:24 PM
Thank you 😁 Im just glad I could do it, before Crysvita that would have been almost impossible!
This sounds awesome. The patent for Crysvita will still last to late 2030 or even 2040 so if something is developed before that it would change a lot of lives.
January 27, 2025 at 1:16 AM
This sounds awesome. The patent for Crysvita will still last to late 2030 or even 2040 so if something is developed before that it would change a lot of lives.
