mitochondrialdisease hashtag performance
#mitochondrialdisease showcases personal stories, awareness, struggles, resilience, education, symptoms, treatments, research, community support, advocacy, genetic disorders, energy metabolism, health challenges, patient experiences, hope, connections, and the importance of understanding rare diseases.
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Waited 2 years for this appt but we learned so much! If you have EDS, Dysautonomia, MCAS, POTS, or related chronic illness, research Mitochondrial Disorder. #chronicillness #ehlersdanlos #hypermobility #mitochondrialdisease #VCU #chronicillnessawareness #dysautonomia #foryoupage #foryourpage #fyp #fypシ
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Day 22 post intestinal transplant. I forgot to mention they also found another clot in my left common iliac vein. This is where I had surgery that utilized a graft, so I will follow up with my vascular surgeon when recommended by my transplant team. The plan going forward is continuing the anti-rejection med regimen for this week. I will have my next scope on Thursday or Friday to see if there are any improvements. We are holding off on feeds until the rejection is under control & treated. Rejection has caused ulcerations & blunting of the villi (structures responsible for absorption) in the small bowel. As a result, tube feeds will essentially make me worse by increasing my ostomy output too much, leading to dehydration. The villi will grow back once I’m no longer in rejection!! I’m just happy to be feeling better & really hope this time it’s sustained. I’m focusing on the accomplishments & positives such as being able to walk a few feet, sitting up in the chair, bathing with OT, having my pain under control again, etc. Spending the holidays in the hospital doesn’t bother me this year bc this is the ultimate gift anyone could ever give or receive. I asked for intestines for christmas & got them!! I literally don’t want or need anything else (except my hospital retail therapy purchases hehe) 🙈 #intestinalfailure #gastroparesis #mitochondrialdisease #transplant #fyp
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Happy happy holidays we 🫶🏼 you!! #christmas #holidays #anticipatorygrief #mitochondrialdisease #leighsyndrome #momlife #terminalillness #motherhood #medicalmama #babynumber2 #bigsister
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Proud of my precious daughter every single day!! 💪🫶🏼 #milestones #anticipatorygrief #mitochondrialdisease #leighsyndrome #momlife #terminalillness #motherhood #medicalmama #35weekspregnant
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Day in the life as a medical mom + 35 weeks pregnant 🩷🤰🏼 #dayinmylife #dayinthelife #anticipatorygrief #mitochondrialdisease #leighsyndrome #momlife #terminalillness #motherhood #medicalmama #35weekspregnant
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When you always dreamt of your boy learning to walk but instead he figures out his wheelchair and you’re over the moon. #mitochondria #mitochondrialdisease #mitofamily #mitofamiliesunited #mitochondrialhealth #liasgene #liasvarient #specialneedsmom #specialneedsfamily #parenting #momlifeisthebestlife #raredisorder #raredisorders #raredisordersawareness #globalbraindamage #lowmuscletone #globaldelaydevelopment
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One of the ✨ODDEST✨ things I’ve been told by someone. So many of us would LOVE to not have it. Takes certain type of person fr #chroniccancer #systemicmastocytosis #d816v #ayvakit #chronicillness #disabled #eds #pots #anaphylaxis #mcas #mastcelldisease #oncology #hematology #mitochondrialdisease #periodicparalysis #epilepsy #seizure #POLG
520.0
Replying to @paraman I don’t have l0ng haul3rs. I have had symptoms almost my whole life. It’s not just teenage girls, and I will fight for those affected from post v!ral illness - no matter the virus. #pots #eds #mcas #pentadsupersyndrome #systemicmastocytosis #longhaul #autoimmune #chronicillness #medicalgaslighting #chroniccancer #ayvakit #disability #mitochondrialdisease #epilepsy #ivig #neuroautoimmune
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I know this video will only get like 200 views 😢❤️🩹💯 My #IVIG #journey #treatment #chronicillness #chronicallyill #myjourney #health #medical #onedayatatime #nevergiveup #sickmom #mom #january #happynewyear #Love #reallife #support #spoonie #fatigue #newlife #newjourney #hEDS #adrenalinsufficiency #hashimotos #gastroparesis #MCAS #mastcell #mito #mttd #mitochondrialdisease #rare #raredisease #zebra #charcotmarietooth #cmt1a
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uh.... just ugh. I just can't say anything yet. #iamright #right #notwrong #nevergiveup #fight #advocate #medical #health #Love #support #reallife #chronicillness #adhd #mom #PANDAS #POTS #dysautonomia #hEDS #ehlersdanlos #mito #mitochondrialdisease #mttd #genetics #son #awareness #mommabear
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Ryleigh Mae we are so proud of you!!! Mito warrior!!!#fyp #fypage #mommas #sayingnewwords #mito #warrior #mitochondrialdisease #proud #proudmom #ryleigh #yougotthis
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