#pseudoxanthomaelasticum

[hmsacharity]

Hypermobility Spectrum Disorders, an update for clinicians. http://hypermobility.org/help-advice/hypermobility-disorders-an-update-for-clinicians/

[jboccytherapy]

My fantastic #ProfessionalMembership pack has arrived from @hmsacharity! Lots of journal reading to do! #OccupationalTherapy #HMSALiveOT #EhlersDanlosSyndrome #HDCT #pseudoxanthomaelasticum #HypermobilitySpectrumDisorder #OsteogenesisImperfecta #SticklersSyndrome #MarfanSyndrome. (at JBOT - Jo Southall)

[erindonnellyellis]

I'm so sorry I have been missing again! I have a lot going on. Between my PXE flaring up, my allergies, and a sudden life change, I have been impossible to get ahold of. I am doing my best to get back with everyone! I'm so sorry! Also, If you know of anyone hiring in the Tahoe area, please let me know. @thano_ellis is looking for a new job. Thanks for understanding! ❤️❤️ For those of you who don't already know, I am a PiXiE. I deal with an invisible chronic illness, most people think that I don't "look sick" but the reality is, I live with a rare genetic mutation called pseudoxanthoma elasticum (www.pxe.org). I deal with a lot of cardiovascular issues, some days I don't have the energy to do much of anything, and simple tasks can exhaust me. This also causes a lot of pain due to the mineralization that is slowly closing my arteries. Here's my story... erindonnellyellis.tumblr.com/post/87414241075/chronic-hope-a-pixie-story 🌱 shredbetties.com/riders/story/erin_donnelly_ellis_jewelry_for_an_active_lifestyle/ 🌱 erindonnellyellis.tumblr.com/post/142874659050/i-am-forever-grateful-that-i-am-finally-healthy #adventurouspixie #pseudoxanthomaelasticum #allodynia #pxe #chroniciolness #spoonie #chronicwarrior

[erindonnellyellis]

The sunset last night was magical! Hiking during the last rays of light during the solstice was heaven on earth. I love where I live and I am forever grateful to finally be healthy enough to enjoy it! ❤️🌱❤️ For those of you who don't already know, I am a PiXiE. I deal with an invisible chronic illness, most people think that I don't "look sick" but the reality is, I live with a rare genetic mutation called pseudoxanthoma elasticum (www.pxe.org). I deal with a lot of cardiovascular issues, some days I don't have the energy to do much of anything, and simple tasks can exhaust me. This also causes a lot of pain due to the mineralization that is slowly closing my arteries. Here's my story... erindonnellyellis.tumblr.com/post/87414241075/chronic-hope-a-pixie-story 🌱 shredbetties.com/riders/story/erin_donnelly_ellis_jewelry_for_an_active_lifestyle/ 🌱 erindonnellyellis.tumblr.com/post/142874659050/i-am-forever-grateful-that-i-am-finally-healthy 🌱 #solsticehike #adventurousPiXiE #tahoesouth #tahome #tahoe #pseudoxanthomaelasticum #pxe #cannabiscures #allodynia #cannabisheals #prop215savedmylife #spoonie #chronicwarrior #invisibleillness #cannabismedicine #ilovemylife #nevergiveup #livebeyondlimits (at South Lake Tahoe, California)

[erindonnellyellis]

I adore where I live. I am forever grateful to finally be able to enjoy my life, and truly live again! ❤️ For those of you who don't already know, I am a PiXiE. I deal with an invisible chronic illness, most people think that I don't "look sick" but the reality is, I live with a rare genetic mutation called pseudoxanthoma elasticum (www.pxe.org). I deal with a lot of cardiovascular issues, some days I don't have the energy to do much of anything, and simple tasks can exhaust me. This also causes a lot of pain due to the mineralization that is slowly closing my arteries. Here's my story. 🌱 erindonnellyellis.tumblr.com/post/87414241075/chronic-hope-a-pixie-story 🌱 shredbetties.com/riders/story/erin_donnelly_ellis_jewelry_for_an_active_lifestyle/ 🌱 erindonnellyellis.tumblr.com/post/142874659050/i-am-forever-grateful-that-i-am-finally-healthy 🌱 #livingthedream #spoonie #cannabisheals #cannabiscures #pseudoxanthomaelasticum #adventurousPiXiE #tahome #dailyhike #forevergrateful (at South Lake Tahoe, California)

[erindonnellyellis]

I am so excited, my @prairiepipes cannabis sprout pendant is here! This piece means so much to me! Cannabis has literally saved my life! After battling for my life for many years, I somehow managed to REVERSE the mineralization due to my genetic disorder through cannabis oil!!!! I have healed in ways no one though was possible! My cardiovascular issues are getting better, and I am about to expand my business again! I’ll be adding clinical massage therapy, Reiki, and NCBTMB approved classes, in addition to my jewelry line! I am in the process of getting my licensing for Nevada and California. I will let you know as soon as I am able to take clients. I am so excited, I NEVER a thought I would heal enough to be able to do massage again! This sprout represents the beginning of my new life! I am growing into a person I didn’t think I would be able to be! The opal heart on this piece means a lot to me, my cardiovascular issues have been helped so much by cannabis! Plus opal is even my birthstone. I’m looking forward to creating the perfect sterling silver chain for this piece! Thanks again Briana!!!! I look forward to collecting more of your art in the future! ❤️ www.prairiepipes.com 🌱www.prairie.bigcartel.com 🌱 For this of you who don’t already know, I am a PiXiE. I deal with an invisible chronic illness, most people think that I don’t “look sick” but the reality is, I live with a rare genetic mutation called pseudoxanthoma elasticum (www.pxe.org). I deal with a lot of cardiovascular issues, some days I don’t have the energy to do much of anything, and simple tasks can exhaust me. This also causes a lot of pain due to the mineralization that is slowly closing my arteries. Here’s my story. erindonnellyellis.tumblr.com/post/87414241075/chronic-hope-a-pixie-story 🌱shredbetties.com/riders/story/erin_donnelly_ellis_jewelry_for_an_active_lifestyle/ 🌱 erindonnellyellis.tumblr.com/post/142874659050/i-am-forever-grateful-that-i-am-finally-healthy 🌱crystal necklace made by me, similar work is available at erindonnellyellis.com #cannabissprout #prairiepipes #cannabiscures #cannabisheals #livebeyondlimits #pseudoxanthomaelasticum #adventurousPiXiE #erindonnellyellis #chronicwarrior #spoonie (at South Lake Tahoe, California)

[erindonnellyellis]

I have so much love for this little girl! The final piece in my healing puzzle! She is so amazing! I may have rescued her, but she saved my life in ways I didn't know were possible!! ❤️ FYI - the spots on her face are not cuts, it's sap from picking up so many sticks. I'm having a hard time getting those two spots off her fur. 😉🐾❤️ For this of you who don't already know, I am a PiXiE. I deal with an invisible chronic illness, most people think that I don't "look sick" but the reality is, I live with a rare genetic mutation called pseudoxanthoma elasticum (www.pxe.org). I deal with a lot of cardiovascular issues, some days I don't have the energy to do much of anything, and simple tasks can exhaust me. This also causes a lot of pain due to the mineralization that is slowly closing my arteries. Here's my story. erindonnellyellis.tumblr.com/post/87414241075/chronic-hope-a-pixie-story 🌱shredbetties.com/riders/story/erin_donnelly_ellis_jewelry_for_an_active_lifestyle/ 🌱 erindonnellyellis.tumblr.com/post/142874659050/i-am-forever-grateful-that-i-am-finally-healthy 🌱 erindonnellyellis.com (link in bio) #myjedidog #adventurousPiXiE #chronicwarrior #spoonie #chronicillness #adoptdontshop #rescuedog #cannabiscures #cannabisheals #pseudoxanthomaelasticum #allodynia #livebeyondlimits #husky #huskylove #ilovemylife #ilovemydog (at South Lake Tahoe, California)

[erindonnellyellis]

I am happier than I have been in years! I NEVER thought my body could heal this much!!! Life is incredible, and I am so happy to finally be able to live it again! I am even in the process of getting my massage license again! Clinical massage is coming to Tahoe, and I can't wait! ❤️ For this of you who don't already know, I am a PiXiE. I deal with an invisible chronic illness, most people think that I don't "look sick" but the reality is, I live with a rare genetic mutation called pseudoxanthoma elasticum (www.pxe.org). I deal with a lot of cardiovascular issues, some days I don't have the energy to do much of anything, and simple tasks can exhaust me. This also causes a lot of pain due to the mineralization that is slowly closing my arteries. Here's my story. erindonnellyellis.tumblr.com/post/87414241075/chronic-hope-a-pixie-story 🌱 shredbetties.com/riders/story/erin_donnelly_ellis_jewelry_for_an_active_lifestyle/ 🌱 erindonnellyellis.tumblr.com/post/142874659050/i-am-forever-grateful-that-i-am-finally-healthy #cannabiscures #cannabisheals #spoonie #chronicwarrior #erindonnellyellis #adventurousPiXiE #pseudoxanthomaelasticum #allodynia #tahome (at South Lake Tahoe, California)