MALS & SMAS Diagnosis Story

Рет қаралды 2,339

2 жыл бұрын

Hello! Welcome to my channel! I decided to create this video to spread awareness surrounding my chronic illnesses. I was diagnosed with Gastroparesis, Postrual Orthostatic Tachycardia Syndrome, & Mast Cell Activation Syndrome about two years ago. I have the choice to be hidden throughout this season of life or I can be Transparent about my struggles. If by sharing my journey & experience helps another individual, I will gladly share parts of my journey.
Please make sure to subscribe for more videos! Help me in spreading awareness by sharing this video. Knowledge is power, that is why conversations like these are so important.
Favorite Products -
docs.google.com/document/d/1H...
Social Media -
Instagram: @hayley.blogg
TikTok: @hayley.blogg
About EDS -
🦓 www.ehlers-danlos.com/what-is...
🦓 www.ehlers-danlos.com/2017-ed...
About MALS & SMAS:
🧬 www.malsfoundation.org/
🧬 rarediseases.org/rare-disease...
🧬 smasfoundation.org/
🧬 rarediseases.info.nih.gov/dis...
About POTS -
💙 my.clevelandclinic.org/health...
About MCAS -
💜 tmsforacure.org/
About Gastroparesis -
💚 www.mayoclinic.org/diseases-c...
💚 www.ehlers-danlos.org/informa...
About Dysautonomia -
❤️ www.dysautonomiainternational....
About Feeding Tubes -
🤍 www.feedingtubeawareness.org/
🤍 oley.org/
🤍 www.theblendmag.com/

Пікірлер: 7

@cherrrriii 2 ай бұрын

thanks for sharing

@tammyquinn8373 Ай бұрын

I hope you were able to get surgery and doing better. My 18 to daughter has all the same things 😞 We had MALS surgery and now waiting for SMAS surgery in September

@madelinelopp3610 Жыл бұрын

Thank you for sharing your story!! I had MALS surgery in August. I had a MTS stent placed in March 2021. I have NCS that needs addressed. And now suspected SMAS. These compressions are beasts!! I hate that there aren't many surgeons out there that know this stuff!!

@ChristinaTheWatercolorFox Жыл бұрын

I have EDS and I’m pretty sure that my son has it and this. How did you get diagnosed?

@HayleyBlogg Жыл бұрын

My Rheumatologist initially brought it up & diagnosed me with Hypermobile EDS. My Doctor then referred me to a geneticist to rule out the other types of Ehlers-Danlos Syndrome & to possibly confirm the initial diagnosis. Hope this helped 💕

@miamullins673 Жыл бұрын

My daughter has an appointment with Dr Thomas Scholbach in Germany. He checks for all vein compressions. Have one, you're more likely to have more. He designed to doplar imaging. It's a 2 hour scan

@KatrinHofmann-jd1fi 5 ай бұрын

Ich war auch in Leipzig bei Professor Scholbach, leider gibt nicht viele Ärzte hier in Deutschland die sich auskennen, bei mir wurde ein sehr seltenes Syndrom diagnostiziert ( Leber) da gibt’s noch keine Namen Info bekommt man über die Selbsthilfegruppe von Frau Mayr. Österreich, steh am Anfang mit meiner Suche nach einer Behandlung