Mobility and hearing can be impaired, and dental problems may occur. I’ve lived with this my entire life and feel its effects every day. Despite the pain and challenges, my XLH doesn’t stop me from living a beautiful life. I’m proud to celebrate being rare.
It’s Rare Disease Day! 🦓 I was born with X-linked hypophosphatemia (XLH), a rare inherited disorder that affects the bones and teeth. It is characterized by low levels of the mineral phosphorus in the blood. Bones can become deformed, soft and easy to fracture.
With the recent cell phone outages residents of the @CityOfBoston are reminded if you have an emergency and need assistance pull 1 of over 1200 Fire Boxes , this technology has been operational since 1852
My fiancé just gave me a shot of blackberry brandy to try to soothe my sore throat…. This is apparently the cure to everything…. I’ll report back if it works.
Exciting day of science, mentoring and social interaction for the entire @CGM_MGH community at the annual scientific retreat! Thanks to our organizers @pnatarajanmd@ksamocha and @JoseFlorezMDPhD!!
Quite possibly my favorite part of owning a house is that we immediately put a water bowl down when a dog visits us. We’re like a canine pub. It’s the best.
Happy Rare Disease Day! I’m living with X-linked hypophosphatemia. XLH affects 1 in 20,000 people & may lead to bone abnormalities & defects that may impair mobility, including bone fractures, hearing loss, ligament & bone pains. #xlh#RareDisease#zebra#RareDiseaseDay
#NIH is seeking input on challenges affecting retention in the postdoctoral trainee community. Better understanding of these challenges will help NIH support competitiveness & innovation within biomedical research & its workforce. RFI deadline is 4/14: https://t.co/Fq9DUSsZJ3