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Feeding tubes are more than just tubes—they’re lifelines for countless chronic illness warriors, providing the nourishment needed to keep fighting each day. Let’s raise awareness and show support for those living with feeding tubes, celebrating their resilience and strength 💙

#careandwear #healthwearthatcares #feedingtube #tpn #chronicillnesswarrior#invisibileillness #feedingtube #tubielife

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Patients visit us from all over the world because we specialize in treating rare conditions‼️📍

Dr. Shouhed is one of the top surgeons in the world for providing treatment for MALS and SMA Syndrome. We’re grateful that our patients take the time to fly to us in order to receive proper treatment for their conditions! ✨
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🥼| Dr. Danny Shouhed
✉️| info@socalroboticsurgeon.com
📞| (310)890-5834
💻| www.drdannyshouhed.com
📍| 436 N Bedford Drive Suite 311, Beverly Hills, CA 90210

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Spending lovely day trips to the beach all summer long. Pt.1 featuring my Sister from another mister, bestie, Kat! Xo 😽 @malswarrior 🥰🏝️🤌🙋‍♀️☝️🥰 after a beach hike at San Pedro’s Royal Palms Beach, we headed to the Cabrillo Aquarium , to pay our fishy friends a visit ! @cabrillomarineaquarium 🎺
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Nothing feels better than communing with nature, and cleansing our spirits and minds by the simple act of respecting and being present in nature. Love you, sissy Cake, tater-tot @malswarrior ! 🥰🤌

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So much fun at the #autismawareness fair with @thinkers4autism ! What a great event to celebrate inclusion and autism acceptance— awesomeness ! My bestie @aquaphotographs and I enjoyed sushi and chatting with all the booths about their products and experiences. Hoorrayyy for #autismawareness #autismacceptance
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🧩🧩🧩🧩🧩🧩🎨🎉🥰🪩#authentic #autismlove #autismfamilies #autismfamily #diversityandinclusion #diversitymatters #diversityisbeautiful #inclusion #equality #neurodivergent #neurodiversity #styleblogger

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Meet Katina Gerstein! @malswarrior

She’s a MALS warrior & we’re extremely grateful for her willingness to share her story!

Median arcuate ligament syndrome occurs when the arc-shaped band of tissue in the chest area presses on the celiac artery and nerve in the upper abdomen. MALS can cause debilitating abdominal pain in some people.

Surgery is the only treatment option for this condition. The most common procedure is called median arcuate ligament release, or median arcuate ligament decompression combined with transaction of the celiac ganglion and nerve plexus.✨

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Most of us believe that anxiety is caused by events and bad behaviour around us. It is normal for us to react to negative circumstances with negative feelings but it becomes a problem when our negative emotions are making life worse for us.

When we repeat negative reactions a lot, it becomes habitual. Ultimately, our anxiety, fear, anger, frustration etc. might be like an addiction; that we have unconsciously trained our brains into relying on these negative feelings to feel that we are alert and protecting ourselves, so we become afraid to let go of the fear! It becomes part of our victim identity for many of us suffering from chronic conditions. For some, usually men, their anger, outrage (which are all based in fear of loss of control) can also become a huge part of their identity and their addiction.

The good news is that we can learn to choose our thoughts and retrain our brains into less anxiety provoking thoughts over time. Start now. No need to wait. It really helps.

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Heute ein Beitrag über das Kompressionssyndrom MALS.
MALS ist zwar rare aber nicht zu rare um es nicht zu sharen.

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Hi #PatientsRisingFam
Every day, Patients Rising “shares the love” with you - our patients, advocates, your friends, families, allies, and the patient community at large. We always extend a warm, supportive welcome to anyone who wants or needs our services and programs.

That’s what we do, and we’re not shy to say it…we love you 💕

On this Valentine’s Day – could you share some love back? You know we’re not comfortable asking you for money, but we’re totally fine asking you to ask others for money for us!

https://www.patientsrising.org/start-a-fundraiser-2/

(or check our Linktree)

Donations will help us serve more people – and share more love! And if you need to sweeten the deal, Jim will be giving free bear hugs 🧸🥰

With your gift, we can help thousands more in 2023.

PLEASE NOTE: When you make an online donation, our form will present you with the opportunity to see if your employer makes matching gifts. Please do check. We will certainly appreciate it - and you can feel even better about your gift!

On behalf of our Board, staff and volunteers - thank you,

Terry Wilcox
Founder / CE

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Hi, my name's Silvia and I suffer from a rare / not so rare / life-threatening and debilitating condition called Vascular Compression Syndromes. So far, I have 4 of these confirmed, incl.:
MALS (Dunbar)
SMAS (Wilkie)
NCS (Nutcracker)
MTS (May-Thurner)
and most probably also PCS (Pelvic Congestion) with a resulting chronic/embedded UTI (and more). The root cause of all this is my genetic connective tissue disorder, hypermobile EDS (Ehlers-Danlos Syndrome).

I have been thinking for quite some time now whether to "go public" with this on social media or not, since I have always preferred not to share too much of my privacy online. However, what made me decide was the surprisingly and shockingly high number of patients around the world who do the same, share their stories publicly and bravely, advocate for both themselves and other patients with the same condition. It was only thanks to many of these that I was able to find necessary information, gain knowledge and understanding of the condition and the many "perks" it brings along the journey! 🙏🏻 And I still continue to learn more, as this condition is a vast and infinite pool of craziness.. (as the more experienced already know well). 🥴🙈
If I could do the same for even just one other patient struggling to find answers, diagnosis and treatment, it would mean the world me!:) So, here I go with modesty and respect, wish me luck on my journey to help myself as well as others.. and hopefully along the way also to contribute with my small portion to the growing awareness pot of this condition! :) 💪🏻🍀😊❤️ Love, Silvia.

P.S. Once again, a huge and indescribable THANK YOU to everyone I have met here so far, gained information, knowledge, understanding and support from. 🤗🙏🏻❤️ Looking forward to meeting more of you!:)

#vascularcompressionsyndromes #vascularcompressions #wilkiesyndrome #wilkie #smas #superiormesentericarterysyndrome #dunbarsyndrome #dunbar #mals #medianarcuateligamentsyndrome #nutcrackersyndrome #nutcracker #ncs #maythurnersyndrome #mts #pelviccongestion #pcs #chronicuti #embeddeduti #eds #heds #ehlersdanlos #hypermobility #chronicillness #chronic #raredisease #patientadvocate #chronicpain

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If I had a dollar everytime I heard "you look fine" or "you're too young" I would be a millionaire!!

Harsh reality is that chronic illness does not discriminate age and anyone can get sick. A lot of people are actually faking being well. We have to push through each day just to keep up with everyone else.

How many times have you heard that?

#lupus #lupuswarrior #lupusblogger #lupusnephritis #lupusflare #lupusawareness #invisibleillness #invisibledisability #chronicillness #chronicpain #chronic #chronicillnesswarrior #chronicallyawesome #pots #endometriosis #fibromyalgia #flares #autoimmunediseaseawareness #autoimmunediseases #autism #autismawareness #mentalhealth #mentalhealthsupport

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Let's learn about MALS, this was such a highly requested bean!

Tag your favourite MALS accounts in the comments or head over to the link in our bio to get yourself a MALS bean💙

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So simple...

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