Hypophosphatasia

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Hypophosphatasia
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    Thoughts...

    There I am... On my bed... In the fetal position again.
    My fingers covering my face as tears run into my palms from the pain erupting in every muscle, tendon, and bone in my body.
    The pain is nothing new... I'm used to it, but then there's this pain... That hits every area at once and reminds me of how bad it can really get.
    Then I start thinking about the future... How much worse it will get with age... All the surgeries ahead of me...
    And the hopelessness comes rushing in... The frustration... The feelings of zero self worth.
    Where is my place in a society that places your value on what your physical health?
    I'm lost tonight... Caught in a cycle of dread and grief. Dread for what lies ahead and grief for what I've lost of myself so far.
    And I wish I had someone to wrap their arms around me as I release this anguish... But the stress of companionship seems to outweigh the joy.
    Who wants someone who cancels more than they show up? Someone who's always exhausted and constantly in pain?
    Just thinking of it exhausts me.
    For now... It seems easier to lie here... With my pain and bear it on my own.
    #EhlersDanlosSyndrome #HEDS #Hypophosphatasia #softbones #MyalgicEncephalomyelitis #OrthostaticHypotension #Osteoarthritis #RareDisease #GeneticDisorder #BipolarDisorder #ComplexPosttraumaticStressDisorder

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    I’m new here! Hello!

    I have lived with Fibromyalgia and Chronic Fatigue since I was 14 years old. I was recently diagnosed with CKD Stage 3A (which is scary to me), and a rare condition called Hypophosphatasia (adult onset). I am also immunocompromised and get sick almost weekly or every 10 days with something new. Hoping that being a part of a support community that can understand, will be an encouragement in my life. I am so weary of it all!
    #weary #persevere #OnedayAtaTime #exhausted

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    I was diagnosed with Hypophosphatasia three years ago...I never thought it would be so hard to find doctor's who knew what the hell HPP was. Then I got diagnosed with Ehlers-Danlos... Where it's near to impossible to find doctor's who know what it is and if they do, they have no desire to treat you.
    With EDS comes Post Orthostatic Tachycardia Syndrome aka POTS, which causes dizziness due to a spike or decrease in blood pressure.
    After getting denied to my hospitals Rheumatology department to see a doctor for POTS today, I asked my daughter's POTS doctor at her appointment to steer me in a good direction for a doctor.
    He automatically understood the challenge I was having and apologized for not being able to accept adult patients. The one doctor that I could see he said is about a two hour trip for me.
    I called them anyway and was told he had an 18 month long waiting list! I'm not surprised as this seems to be the case when you have "rare" disorders, but I still felt defeated.
    I, of course, put my name on the waiting list... What other options do I have?
    And there is the problem people. We have no other options but to wait... And waiting for the majority of us can be dangerous. Most my days lately are spent getting dizzy, some days are bad enough that I almost faint. I wonder... How do I wait 18 months before I can have a specialist help me?
    Not only do we have to deal with the waiting game, but no one acknowledges the trauma that rare and chronic patients have to endure. We are treated like pariahs in the medical community, treated as if we're a burden.
    Why aren't there more specialists and informative doctor's for rare diseases? Why isn't there better care for us? Don't we matter too? How do we educate more doctor's?#EhlersDanlosSyndrome #hypermobileehlers-DanlosSyndrome(hEDS) #Hypophosphatasia #RareDisease #ChronicIllness #Doctors #Defeated #CPTSD

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    How many HPP patients here take Strensiq?

    Strensiq is the injection for treating HPP. It is wildly expensive, but there are organizations that will help you cover costs that your insurance doesn't. NORD is one.

    #Hypophosphatasia #Strensiq

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    This month has been hard on me so far, with my 37th birthday approaching and knowing I'm not anywhere near where I wanted to be in my life right now. Chronic Illness took me off track years ago and I'm having a rough time figuring out what my future looks like from here. So if you're feeling this way too, if you're struggling to hold it together right now, just know you aren't alone💙 #ChronicIllness #Bipolar2Disorder #EhlersDanlosSyndrome #Hypophosphatasia #RareDisease