Sofia Earning Her Stripes

Staci is the sweetest! But she also a badass advocate for SMAS/ACVS people like Sofia!!! ❤️💪❤️

I love this! Dr Alvear traveling the globe teaching his SMAS surgery technique. ❤️🙏❤️. I hope and pray this young lady is healed.

Today is the day- Drs Domingo and Vennie Alvear are in South Africa to assist with surgery for 13 year old Seanna. Domingo Alvear is there to teach his surgical technique to Seanna’s surgeon while repairing Seanna’s failed SMAS surgeries. Please keep all involved in your thoughts and prayers. Updates will follow.

Finally getting this dang port replaced this morning! She’s ready! If all goes well she should get discharged later. 🙏🙏
Oh, and someone broke into my car last night. Well, they opened the door and rummaged through stuff, but I think they only got mailbox keys and maybe my sunglasses. 😡
Children’s hospital decor is far superior to adult hospitals.

I can feel the emotions from across the globe. ❤️🙏 Dr Alvear is such a gift to this world.

WE HAVE APPROVAL!!! We are absolutely over the moon. I can actually cry with happiness. Seanna’s surgery is OFFICIALLY penned in!



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This is exciting news!

I hope this warrior get the help she desperately needs to survive.

🙅🏼‍♀️💔 🏥 THERE IS NO TRUST 🏥 💔🙅🏼‍♀️

From Anna.

We are a few days down the track from Trinitys last seizure and I guess we are finally starting to process it all?

It is hard, so hard at times to try and explain everything that happens and what we are actually trying to live with.

There is nothing easy about witnessing a seizure, infact it is the most terrifying experience of my life, watching my baby go through it, and I have seen some stuff in my lifetime so am not so easily overwhelmed these days.

The only relief that comes, is when she is out the other side and she doesn't have any memory of going through it.

The way her body stiffens makes it impossible to move her, and the noise, that noise that radiates from her body and the way her eyes are fixed open but she is totally unresponsive rips at my heart in ways I cannot describe.

There is nothing to be done, but to wait it out and try and control one's own feelings of complete panic, and for me, try to video it as it happened as recommended by the hospital after her last seizure.

Then it is followed by that moment when the paramedics load her into the ambulance and you have to prepare yourself to walk through those dreaded hospital doors, not knowing what attitude your child is going to be met with.

I will acknowledge that our past few times when she has ended up in ED, they have been really good, despite my still being angry at what the Auckland team has done to her and probably not being the warmest of support people to encounter.

This time though, was a bit different. Walking through those doors I was out of fight, I was calm, I didn't have any hope of Trinity getting help let alone have any expectations.

The Dr examining her was great, and he was trying his hardest to find a way to get things happening for her, as I was thanking him for his efforts but also acknowledging the reality that our hospital won't treat her. Telling him how her Dr has been sending multiple letters seeking support for her and getting met with crickets.

Bloods showed a drop in her potassium and much to my frustration upon later reading the discharge summary the " iv fluids" he offered her had actually turned into "iv potassium" which had I realized this, our decision to move forward with our pre existing plans to attend another appointment could have been different.

The "slight drop in her potassium" was significantly more that what I had understood it to be, and the potential impacts of it dropping further had not been fully explained. Instead I believe, it had been lost in translation of him also acknowledging that she desperately needs nutritional support or she is heading towards a catastrophic event.

We have become aware of conversations happening in that hospital and know of the attitudes facing my girl.

So, while he was mentioning clean slates, I was sadly telling him that there is so much crap on the slate, I don't believe it can ever be scrubbed clean.

At least not while they are refusing to acknowledge the diagnosis, not while that team in Auckland is still being invited to have an input, not while they are refusing to look at and accept the facts.

Trinity is deeply afraid of our public health system and hospitals.

She has learned in the most painful way that she cannot trust it. She is living with the horrifying reality of how easily it can kill you, while she is desperately fighting to stay alive.

There is no trust. They have taught her, and me that when she gives them trust, her life is put at risk. She is living with that reality, and the fight is on to make sure she survives it.

So I sit here now, once again feeling rather overwhelmed and slightly defeated as the reality of the size of the fight once again confronts me.

Trying desperately to keep hold of hope, trying to assure my baby that there is still hope.

Desperately seeking the support that will save her life, while trying to regulate my own feelings of frustration over the fact that the Drs and specialists that we see privately can clearly see and agree that what is being done to her is so very very wrong, and yet our public health system continues to get away with it.

I know alone, there is no hope of winning this fight, but together, there is still hope as we continue the battle to raise awareness and create change for my angel girl and the many others like her.

https://givealittle.co.nz/cause/health-system-fails-our-18-year-old-save-a-life

Again- WHY??!!! This is a white allergy pill, so why does it contain artificial food dye? 🤬🤬🤬

No matter what side of the MALS Journey you are on it can be an incredibly difficult road.

If you are the Mom struggling through your MALS symptoms while you watch your kids grow from a bed we see you. We see your tears when you can’t be as active as you want to be with your kids. We see the guilt when you sound harsh because your pain is high. We’re here to say you are enough. You are doing the best you can in an impossible situation. Give yourself the grace and love you give to your kids when they don’t feel well.

If you’re the Mom watching your kid struggle through their MALS battle. We see you too. We see the frustration with the doctors who won’t listen. We see you fight tooth and nail for every test without leaving a stone unturned. We see the tears you hide to yourself because you don’t want the focus to shift from your child to you. We’re here to tell you that we see your suffering too. It’s heartrending to watch your child be in pain. We know you’d switch places with them in a heartbeat. Allow yourself to feel what you need to. Find someone who can be your sounding board when you want to scream to the world. Your role in this journey is hard too and it’s okay to say that.

We hope you all have an amazing Mother’s Day. Allow yourself to get pampered and be held up to the world stage.

Dr Alvear is an angel. I hope enough funds are raised to get him there.

BackaBuddy | Your SA fundraising platform Online campaigns to raise funds for causes you are passionate about. Free Campaign Support. Proudly South African. Trusted For 11 Years. Types: NPO Funding, Individual Cause Funding, Charity Funding.

Mark your calendars!

One week from today Dr. Goodman will be talking and answering questions. We’d love to see you in the Metrodora Demo Kitchen or virtually on Teams. It is free to attend!

Please RSVP to Sara Morgan at the email below.
[email protected]

Webinar Registration Link: https://tinyurl.com/2k8sa9x8

I’m pretty excited about this project.

Announcing Met X: The Next Step in Understanding Chronic, Complex Conditions A year ago, the Metrodora Institute launched to break down the silos between specialties of medicine and between research and clinical care. Our goal was to create a blueprint for how chronic, complex conditions should be treated.

Fluoroquinolones can be dangerous for people with EDS.

Mom, 33, Disabled After Antibiotic Causes Toxic 'Floxing' Reaction: 'Like a Bomb Had Gone Off in My Body' (Exclusive) Hailey Sebert, a mom of 2, was prescribed levofloxacin for a tooth infection, which resulted in her being disabled from fluoroquinolone toxicity, also known as ‘floxing.' She tells PEOPLE in this exclusive interview that she wants to spread awareness about the risks of taking certain antibiotics.

I’ve heard that for now this is being classified as a sub set of clEDS.

https://ehlersdanlosnews.com/news/new-form-eds-identified-mutation-thbs2-gene/?fbclid=IwAR2IgHU6W3lSUH7zXKuERY_C351Ohw9EEbO7J7Djg6zS_-5eRXW4UHxv_38_aem_AfY1c6ZuCJ-ThqrXWMH6MXnP3JlS4HKHS34PPC-JonQ8jcQhN631c1XNzq4jKwvKO5E

New form of EDS identified by mutation in THBS2 gene A mutation in the gene THBS2 causes a newly defined form of Ehlers-Danlos syndrome (EDS), a new study reports.

Interesting view that MCAS or rogue mast cells may cause EDS or hypermobility and a slew of other inflammatory issues throughout the body and brain.

The Link Between MCAS, POTS, and EDS with Dr. Leonard Weinstock Mast cell activation (MCAS), Ehlers-Danlos syndrome (EDS), and postural orthostatic tachycardia syndrome (POTS) are three often debilitating conditions on th...

Monday:
We made it home in time to watch the eclipse! Sofia did not want to miss this magical time with her brothers. ☀️🌙❤️

Update Sunday night:
Stopped the last of IV meds this morning, she’s hitting her goals, and we’re ready to get out of here! But they do want to keep her one more night. Hoping to beat the eclipse back home tomorrow morning.

This sure hasn’t been the easy, laparoscopic gallbladder surgery I’ve heard people talking about. It looks like they’ll keep her until at least Monday.

The zebra is for EDS, but its companions (especially MCAS ) are stubborn jackasses!!

We often hear the term ‘Trifecta’ in HSD & EDS.🦓

The HSD & EDS Trifecta:
🔹HSD / EDS
🔹MCAS (Mast Cell Activation Syndrome)
🔹POTS (Postural Orthostatic Tachycardia Syndrome)

🩺Dr. Saperstein and his expert team at the Center are here to provide personalized care for EDS & HSD warriors, addressing issues like joint pain, headaches, POTS, GI problems, and mast cell activation syndrome.

Whether you’re in Arizona or beyond, we’re accepting new patients—your journey to wellness starts with us!🌟 ⁣ https://bit.ly/LearnMore_EDS

Update:
She’s in recovery.
The surgeon said the gallbladder was inflamed and needed to go, but he was able to do it laparoscopically.
Since she’s now an adult, I can’t be with her until she goes to a room. 🥺

Sofia’s in surgery. 🙏🙏🙏

Worthy of his rage! Go get em Dad!!

Radio host coping with 'trauma', 'rage' after fighting for his daughter's health 'Those who agitate seem to be the ones who are able to get what they need'.

One whole year free from SMAS!!!