I was diagnosed with juvenile Hypophosphatasia in March 2025. Started Strensiq 6/2025. Tree and plant geek. Conservative, Mayflower/Ulster Scots heritage.
Missouri, USA
Joined October 2025
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I have not been on X very long. My youngest of three children, 23 year old, told me never to get on this app.
I had high hopes of spreading awareness for a rare genetic disease that has and is affecting my family. I was diagnosed 14 months ago with juvenile Hypophosphatasia. This is why my screen name is “Low ALP Matters.”✌🏻
Today is World HPP Day, and I want to take a moment to share something about a disease that most people have probably never heard of.
In March 2025, after years of unexplained health problems, chronic pain, orthopedic issues, and declining physical ability, I finally received a diagnosis: Hypophosphatasia (HPP).
HPP is a rare, inherited metabolic disorder caused by mutations in the ALPL gene. It affects the body’s ability to properly mineralize bones and teeth, but its effects can extend well beyond the skeleton. It can impact muscles, joints, mobility, energy levels, and quality of life.
For years, I knew something wasn’t right. I just didn’t have an explanation. Like many people with rare diseases, I spent a lot of time trying to understand what was happening to my own body.
Getting a diagnosis changed everything. In June 2025, I began treatment with Strensiq, an enzyme replacement therapy specifically developed for HPP.
The difference has been significant. My strength and mobility have improved, and I have gotten back a part of my life that I honestly wasn’t sure I would get back. I still deal with fatigue and other challenges, but I am in a much better place than I was.
One thing I’ve learned is that you can look perfectly healthy on the outside while fighting something every single day that other people cannot see.
I’m sharing this for awareness. HPP is rare, frequently misunderstood, and often misdiagnosed. Early recognition and proper diagnosis matter.
If you’ve never heard of Hypophosphatasia, now you have. And if someone you know is dealing with unexplained bone pain, fractures, dental problems, muscle weakness, or persistently low alkaline phosphatase (ALP), it may be worth asking questions.
Sometimes the hardest part of a rare disease is getting someone to recognize that something is wrong.
Today, I’m grateful for answers, treatment, and the opportunity to keep moving forward.
#WorldHPPDay #Hypophosphatasia #RareDiseaseAwareness #HPP
On #WorldHPPDay, and every day, we stand with the #hypophosphatasia (HPP) community.
In Rare Connections in HPP, Antje, Lisa and Mario share their experiences living with this complex #RareDisease. Listen to their stories at rareconnectionsinhpp.com.
Please help spread awareness!
Today is World HPP Day! 💚
Hypophosphatasia (HPP) is a rare, inherited disorder that can affect people of all ages. Raising awareness can help more people recognize the signs and find answers.
Learn more: ow.ly/XJ185102fR6
#WorldHPPDay #SoftBonesHPP
Today is World HPP Day, and I want to take a moment to share something about a disease that most people have probably never heard of.
In March 2025, after years of unexplained health problems, chronic pain, orthopedic issues, and declining physical ability, I finally received a diagnosis: Hypophosphatasia (HPP).
HPP is a rare, inherited metabolic disorder caused by mutations in the ALPL gene. It affects the body’s ability to properly mineralize bones and teeth, but its effects can extend well beyond the skeleton. It can impact muscles, joints, mobility, energy levels, and quality of life.
For years, I knew something wasn’t right. I just didn’t have an explanation. Like many people with rare diseases, I spent a lot of time trying to understand what was happening to my own body.
Getting a diagnosis changed everything. In June 2025, I began treatment with Strensiq, an enzyme replacement therapy specifically developed for HPP.
The difference has been significant. My strength and mobility have improved, and I have gotten back a part of my life that I honestly wasn’t sure I would get back. I still deal with fatigue and other challenges, but I am in a much better place than I was.
One thing I’ve learned is that you can look perfectly healthy on the outside while fighting something every single day that other people cannot see.
I’m sharing this for awareness. HPP is rare, frequently misunderstood, and often misdiagnosed. Early recognition and proper diagnosis matter.
If you’ve never heard of Hypophosphatasia, now you have. And if someone you know is dealing with unexplained bone pain, fractures, dental problems, muscle weakness, or persistently low alkaline phosphatase (ALP), it may be worth asking questions.
Sometimes the hardest part of a rare disease is getting someone to recognize that something is wrong.
Today, I’m grateful for answers, treatment, and the opportunity to keep moving forward.
#WorldHPPDay #Hypophosphatasia #RareDiseaseAwareness #HPP
This is why I am “Low Alp Matters.” Please help me spread awareness for this under diagnosed genetic disease.
@1capplegate I understand your frustration with misdiagnosis and no diagnosis. Please check your alkaline phosphatase levels, it is usually tested at yearly checkups. If it is low ask about it, doctors have been trained to only look for high ALP. #HPP
This is why we need to vote red this election and every election!
En France, on a inventé le Concorde.
En 1969, il décollait et atteignait Mach 2 symbole de la grandeur gaullienne, conçu pour défier les Américains.
En 1972, le TGV 001 battait le record mondial à turbine (318 km/h).
En 1981, le TGV électrique reliait Paris à Lyon à 260 km/h. En 2007, il pulvérisait encore le record mondial sur rail : 574,8 km/h.
Dans les années 70, le plan Messmer lançait le plus grand programme nucléaire civil de l’Histoire : 58 réacteurs, jusqu’à 70-80 % de notre électricité, une indépendance énergétique que le monde entier nous enviait.
Dassault, Sud-Aviation, EDF, Framatome, la SNCF : nos ingénieurs étaient les meilleurs. On avait dix à vingt ans d’avance sur presque tout le monde.
Puis 1981, Mitterrand. Nationalisations massives (banques, acier, chimie, électronique, aéronautique). Semaine de 39 heures. Lois Auroux. Charges sociales qui explosent. Syndicats tout-puissants. Fiscalité punitive. Droit du travail rigidifié.
En moins de cinquante ans, le socialisme a transformé un pays d’ingénieurs conquérants en un pays de grèves, de délocalisations et de stagnation relative.
L’industrie est passée d’environ 28 % du PIB à 11 %.
Le Concorde a été abandonné. Notre nucléaire a été presque démantelé pendant des décennies faute de choix politique mortifère.
Ce n’est pas le destin, c’est le prix d’une idéologie qui a préféré redistribuer et réglementer plutôt que construire et innover.
A bon entendeur.
Living with hypophosphatasia means frequent injections with current therapy. Efzimfotase alfa (ALXN1850), from the same company, is under FDA Priority Review with a decision targeted for H1 2027 and is studied as every-2-week dosing. Asking our government and @FDA to keep this moving for the HPP community. @POTUS @SecKennedy
Low Alp Matters 🇺🇸 retweeted
You don't have to be a genius to know that President Trump is being sabotaged by Zelensky, the oil companies, the Fed, Congress and the Senate. I know we all are feeling the pain but losing the midterms is not an option. Show up and VOTE RED.
HOLD THE LINE!
Low Alp Matters 🇺🇸 retweeted
I’m tired of the Lindsay Clancy thing.
The left has been killing their children forever.
Vote Red and follow Jesus
We should be standing up for the life of the innocent