#marfansyndrome

[prettylittlelyres]

Curls of Smoke - Chapter 3 - now available to read on Wattpad!

After his girlfriend's manipulative behaviour reaches a terrifying peak, Florian Fleet leaves the school he attended with her and applies for a place somewhere new: on the ballet course at Oxworth Arts Academy. Healing from the trauma of that abusive relationship and struggling to keep his father happy, Florian's new life is rocky to say the least. But shocking news from home is about to make it even more difficult, and Florian's world will never be the same again.

“Don’t be upset?!” shrieked Kayla, “Of course I’m upset! Why wouldn’t I be upset?! You’d rather spend time with Trina’s brother than with me!” She jerked her head in Charlie’s direction. “Yeah, I know you’re eavesdropping!”

Charlie closed his sketchbook and put it in his bag. “To be honest, Kayla, it’s hard not to overhear. I’m in the same room, and you’re shouting.”

“Get out of my studio!” Kayla snarled at him, throwing her bag in his direction. It fell short, but made him flinch all the same. “God, you’re pathetic.”

“Fine, I’ll wait outside,” Charlie said, flinging up his hands in exasperation, “Duchess Gloria! Shada to vada you’ve venayed to class in such a kervare stink, but maybe it’s nanty but a shoddy journo.”

Chapter Four is also now available! I’m making the first upload of each month a double-feature, so I’ll be uploading two chapters in the first week of January, February, etc. as well.

[thedarkmarkshow]

An #allnew @darkmarkshow drops tomorrow as @gothcomedian and @nicolesixxbooks had so much fun chatting with @badassblindcomic This #podcast drops on #iHeartRadio #Spotify #applepodcasts and all #podcastcatchers tomorrow #podcasting #podcaster #podcastersofinstagram #podcastlife #laurahernandez #comedy #comedian #standupcomedy #standupcomedian #metalaf #blind #tattoos #marfansyndrome #poet #activist #funny #lol #lmfao (at Hollywood, California) https://www.instagram.com/p/CiVeqYepjZP/?igshid=NGJjMDIxMWI=

[planethope]

Generations of Marfan: Part 1

Generations of Marfan: Part 1

#strongwomen #writer #author #entrepreneur #blog #blogger #canadian #alberta #kingdom #faith #marfanawareness #marfan #marfansyndrome #genes #geneticdisease #genetic #chronicillness #illness #sickness #disorder #hospital #parenting #moms #kids #grandkids #grandparents #parents @MarfanFdn @themarfanfoundation @diane.herzog @zephyrwildrose @themarfanfoundation Well, how to try and explain genetic…

[austincarlileworld-blog]

Austin is at The Marfan Conference in California, this weekend.

[donzamora]

The Oraclean Code

                                             The Oraclean Code

It was the moment he had dedicated his young life to, so he told himself positive affirmations as he walked up a cobblestone pathway, leading to a temple of immense height and beauty. From the nervous child’s perspective, this temple could touch the sky.

Today was his Blessing Day in Seville. When a child reaches ten, they are brought before the Oracle Eight. All of their memories are shared with the Oracles, who will then determine which segment of Faith they belong to.

Each sex has four different segments, this boy deeply longed for the long range specialty. Walking into the temple, his heart was racing, body sweating, and his vision began to blur. The thin bodied boy begins to takes steps based off of his memory and not what he can see. He tries to collect his thoughts,

“Zamora Seville!” A commanding voice echoes throughout and sends shivers into the young boy now named.

Upon hearing his own name, he snaps out of his state of physiological distress and realizes that he is no longer in the temple he has prayed at every week since he was born. Zamora scans his entire surroundings, he now sees a vast open sky, layered with countless stars. Looking downward he sees the ground has taken on a purple color that forms a gradient into the black background of the sky.

The olive skinned boy began to feel all of his fear and anxiety begin to leave his body. The more he stares into the mesmerizing sky, the more all of his worries seem to leave him.

“I hope our baby is okay…” A woman with striking dark features comments. Diana, Zamora’s mother, is talking with her family. “I need everything to be okay.” Her rings begin to glow,

“Diana you mustn’t!” A tall fare skinned man grabs her arm. “You know that if you interfere with his memories, or affect Zamora in anyway, he will miss out on everything.” Diana then gave her husband a look of pure anxiety,

“I won’t even be noticed, it’s just that…what if there are memories that need shrouding?”

“Zamora has been the most focused of our children, he would not do or say anything that violates The Oraclean Code.” Out of everybody in the family, Diana knew Zamora the best. So what is it that is making her be in such a state of panic?

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

“Come on Zam…. You’ll never become a ranged specialist at this rate.” These words, said in jest, came from the mouth of Zamora’s childhood friend, Christian. Christian pulls the arrow out of its’ missed mark and tosses it into the ground. He walks over to Zamora, keeping eye contact throughout. Something felt different to Zamora and about the way his best friend was looking at him. Christian, the first one brave enough to break the silence, says,

“Since when do you miss buddy? Something the matter?” Christian possesses a very relaxed gait. His steps are as carefree and childish as his innocent personality. He has an aura of light that draws others in with his natural positivity. This lightness directly contrasts with his large black pupils, which left very little white space in his eyes. Christian was tall for his age, with a well developed chest, a chest that he often caught Zamora staring at.

Zamora meets his eyes to Christians’, keeping a serious gaze. He breaks the silence again, “Well…are you one-hundred percent sure you don’t want to go with me then?”          

This image of his friend, with his arms folded back behind his head while he asked this question is forever painted vividly into Zamora’s memory. What if he really had taken Christian up on his offer? How the hands of fate would had been altered....         

Zamora looks away in order to ignore the questions as he draws his arrow once more….

“Come on now Zam…. Can’t have you ignoring me on my last night here.”          

Zamora’s focus remains on his target as he releases the built up tension on the bowstring. Christian jokingly scowls... as the arrow travels through the air, Christian blinks. The next thing Zamora realizes, Christian is standing nearly five meters behind him with the arrow and a smug look on his face. While exhaling, Zamora turns around and begins to stare intensely at is friend.         

He wants to remember this image perfectly. Christian was wearing his standard white tunic that he somehow always manages to keep clean. Paired with simple blue jeans, loose fitting for movement, Christian also wore a purple scarf. The scarf was a present from Zamora, it was a present for him the day he realized his dream of joining the Delving Corps. His favorite piece of clothing was long and wrapped several times around his neck with the D.C. Compass emblem sewn carefully in.

“Hmmm….” Christian’s face begins to change as the colors grey and black begin to paint themselves onto the sky. “Well if you don’t want to talk to me, I may as well leave.”           

Zamora sees him begin to turn, so he quickly draws another arrow and shoots it straight into the air above him.          

Upon hearing the arrow release, Christian casually turns around and looks directly at Zamora, who already has another arrow drawn. “I thought for sure you would be sad, but I must say anger is not the prettiest look on you.”      

Zamora slightly winces, and then effortlessly releases his finger, throwing his body momentum forward in order to follow up with another attack. Christian confidently leaps high into the air, safely dodging the projectile. Zamora is now close to Christian and hurls own body weight up into the air. Just as Zamora was about to make contact with a frontward facing somersault kick, Christian blinks once more.         

Zamora evens out his body’s momentum after the missed kick in order to land safely onto his feet. He slowly turns around while drawing another arrow.

Christian slyly comments while now facing Zamora, “It’s futile, you cannot hope to beat me before you have achieved enlightenment.”

Zamora places several more arrows onto the bowstring and begins the countdown in his head. “Three..two…one…” He leaps into the air and releases.

Christian slightly bends his knees to avoid the incoming attack, and just before he was about to jump, he hears an arrow strike the ground behind him. Now pinned to the ground by his scarf he awaits the incoming projectiles. “you always do impress me.” The barrage of arrows all find their marks and pin Christian to the ground through his clothes. Zamora’s shots were so precise the he puncture no skin in the act of pinning him to the ground.

Zamora walks over slowly now, keeping eye contact throughout. Christian tries to wriggle out as he says, “Wow, I’d hate to see your anger channeled at an enemy.” Zamora kneels down and removes one of the arrows…

“I’m not angry” He removes another arrow.

It’s just that…” Zamora removes the rest of the arrows as he tries to find the rest of his words. He mutters…”I don’t know.” In this moment, uncertainty is evident in everything Zamora says, it is carved into his facial expressions, and portrayed through his lack of eye contact.

Christian tries to help his friend, “well buddy, I’m here now.” Zamora distances himself from his…..

[charlebaltimore420-blog]

View this post on Instagram

A post shared by Charl'e Snaponem Baltimore (@charle.huff.baltimore420)

This sucks! Big prayers to the O'Neal family. 🙏🙏UCLA basketball star Shareef O'Neal, Shaq's son, says he'll be forced to sit out next season due to a heart issue that will require major surgery but vows to return ASAP. I #reposted this but #marfansyndrome should definitely be considered. #abelincolnsdisease #shareefoneal #shaq #tmz #ucla #prayers #follo #followforfollowback #followers #baltimore422 (at Cape Girardeau, Missouri) https://www.instagram.com/p/BoSCsFtBM1F/?utm_source=ig_tumblr_share&igshid=ep4auk13ehzj

[andyerikson]

The road trip home! From the 2018 Marfan Conference at Stanford :) Katie Lovebomb is incredibly silly, adorable, spontaneous, beautiful, knowledgeable, compassionate, adventurous, real, raw, authentic, kambucha filled, dance skilled, hugable loveable, and so much MORE! And I had such an amazing time performing with her at the Marfan Conference this year! Excited to continue to create and inspire as many people as we can together! And now, I’d just like to present my BFF award to... 😂😂😂😂 LOVE YOU! #marfansyndrome #marfanconference2018 #marfanfoundation #unicorn #love #connectivetissuedisorder #aorta

[brigadier-rena-jarman]

To the woman who lowered her voice as I walked by with my new scar out in the open cause it is stupid hot right now; please don’t feel the need to mumble about my scar as we walked by one another you can just ask me I don’t bite. In fact I’d be delighted to tell you about both of my scar journeys considering most people that have these are more in their elderly years since that’s more of a thing to happen later in life and it wouldn’t be so out there for everyone to see as it is with myself. I happened to hear you mumble under your breath about a deep cut to your friend walking next to you and my heart sank a tad bit because even though I may come across as the most confident in my skin with these very big very serious scars I’m actually not. It’s a different story with the one on my back since I don’t ever see it I don’t ever care but with this one so very front and center I am a bit more self-conscience about it and worry more about it since it stares me in the eye every time I glance at a mirror.

[lilunas-stuff]

Friend did my makeup. Who's a pretty little alien with marfan syndrome and schizophrenia? It's me.

[aishaadkins]

Grief should not come with expectations. Three years ago, I lost my best friend from high school to complications of Marfan’s syndrome. About a month after she passed, I found myself on a plane to San Francisco’s Zen Hospice Center (now @zencaregiving) to talk about grief and caregiving. I dedicated my first solo trip to her memory, since we had planned on taking a trip out west. Last year, just before lockdown, I added silver to my Senegalese twists, since she loves to play with hair color. This year, I wanted to make a fabulous Italian dinner and indulge in all the self-care. I ended up making pretty decent spaghetti, taking a bite of a store-bought cannoli that left much to be desired, and assembling office furniture. I wanted to watch a classic film starring Marilyn Monroe or binge some original Twilight Zone, but I was too exhausted for any of that. I ended up crashing on the couch. In the past, I would have been pretty depressed about not being able to honor Anna in the way I thought I should. But as I’ve processed this grief – and grief in general – I have extended myself a bit of grace. I understand that remembering that I don’t have to relegate doing special things to remember my friend to just one day. Nor do I need to feel pressured to do something extra special to remember her. Anna is always with me. No elaborate plan or calendar date will change that. Even if I did nothing else except acknowledge what happened on that day 3 years ago, I would still be a good friend and would still be honoring our friendship and her life. So when you grieve, be kind and gentle with yourself. Grief is not linear and love needn’t be relegated to a single day. No one activity can fully capture the fullness of your love for those you’ve lost. #Grief #Love #Friendship #BFF #Joy #Pain #Grace #Memorial #Tribute #Memory #MarfanSyndrome #HeartHealth https://www.instagram.com/p/CMKw8PYp4IN/?igshid=1n9atdr2mpbpr

[thelifeoflorna]

~11/2/2021~ Today has felt like a break from the norm. Had to get up and out by 8:30 am as had an appointment at the eye hospital in Brighton. Had to get the bus there by myself as no PA support today. Surprised at how busy the buses are in Brighton 😮 The eye hospital was a bit of an experience - I was quite surprised my appointment was going ahead as it was a non-urgent appointment to rule out a feature of #marfansyndrome 🙃 but at least it's off the list now. Turns out I entered the hospital through the wrong door - headed straight to the main entrance - someone was walking out of it at the time so didn't see the sign on the door saying to go to the side entrance where they were covid screening - so was sent back there 🙈 Tbh covid screening was the most stressful part - as usual had to explain that I couldn't swap my mask for one of their medical ones as I'm allergic. They got it agreed with a nurse that I was fine to carry on wearing my own. But then when I was sitting in the waiting room, it seemed like every passing member staff asked me to change my mask and I had to go into the whole thing again 😠 Saw a nurse first who did some initial tests - I had some eye drops put in to dilate my pupils and then I was taken round to the A&E bit to wait to see a dr - I had to wait well over an hour and was finding it quite difficult sensory wise as people walking everywhere in different directions and lots of echo, but in the end managed to stay calm by reading a really good book on my kindle. The dr I eventually saw was so so lovely - I have perfect vision and no eye problems at all - just about the only thing going for me health-wise! 👁 Was lunch time by the time I got out - ordered a McDs on my phone as click and collect, but when I got there to pick it up, this woman came to the door and started gesturing at me saying they were closed for click and collect - I explained that I had already paid and the app was showing them as open for this service - the manager came out and agreed to get me my food as a one-off, but felt a bit shell-shocked by the whole experience 😢 Had a quick look at the sea, but it was absolutely freezing out so got the bus home ❄... (at Brighton Seafront) https://www.instagram.com/p/CLKnB_8nqEjpd3vHGWAKMdrsBR7cpI8PNEXPLA0/?igshid=z3pa69u125lc

[bonegender]

To my fellow trans guys with Marfan's:

If you are considering going on T, just know that you may experience pretty debilitating cramps in your abdominal area due to rapid muscle growth. Clear your symptoms with your doctor before writing it away or getting a pricey emergency room bill.

These abdominal pains will be centralized above the diaphragm and come and go. If you are experiencing deep, ripping and burning sensations those are NOT muscle contractions and you should call 911. The pain I am describing will be almost topical, sitting on top of your ribs and stomach area.

Stay safe out there.

[donzamora]

Departure for Tritania

Walking towards the front of our castle gates, I feel the winds of change breezing all around me. There is nothing like a vague adventure full of danger to take your mind off of a family that likes to lie their asses off!

“Zamora, would you like to ride with me?” Serenity asks as I hand her my bag. Before I can answer, I hear familiar footsteps.

“You were gonna leave without me?! That is quite some nerve!”

I turn and see Coryn standing there with her long curly hair slightly covering her face. It is apparent that she is fuming. I can tell she’s genuinely angry because her gloves are faintly glowing.

“Coryn, we’ve gone on so many missions together, you know I would love to have you once more, it’s just that all the Seville children will be vacant from our homeland. It’s imperative that Mother and Father have people close to them that they can trust.” Her gloves start fading and I see sadness overcome her face.

“Yeah…but.” Before Coryn could finish her sentence I see Sofia fly in from over the castle walls. Coryn curtsies, “My Lady”.

“Coryn, you have been a member of this family for years, no water trial can change that, please, no need for such formalities.” Coryn lets out a faint smile that can be seen from her lowered head.

“Well, if I’m a member of this family, why do I have to stay while you all get to leave?”

Sofia walks closer to Coryn and gently moves the hair from her face.

“Because as a member of this family we all have a duty. There is literally nobody we trust more to safeguard these lands.”

“And what would stop me from joining up with you guys later? It is my sworn oath to protect you as well Sofia.”

Sofia’s tiara begins to glow,

“No, Sofia, please!”

“Because, as the Next in Line, I command you to stay within these lands until a Seville child returns.”

For a brief second you can see Coryn’s veins more prominently as she fights against the command. Witnessing this scene I am fighting back tears, it kills me to see her so distraught, but this is for best. Coryn releases the seal on her wings with a simple extension of her arms.

“If you command it my lady, then so it shall be.”

And just like that my best friend flew off without saying a word. Her tears fell down on us as she soared towards the mountains.

“She shouldn’t be unbalanced for long.” Serenity slyly states. Watching her hand movements carefully, I proceed to see her transform the bag into a small crystal and place it onto her shoulder blade armor. This was the first time I had seen my dance teacher in battle gear. Her flight suit had long arching pieces, with every section possessing the most beautiful color gradient. Each part had a dark blue hue, originating from her heart and extending into a deep pink. Although the colors are rather eccentric, it still has a sense of regality radiating from it.

“So which are you better at Sere? Dancing or magic?” There’s no real point in being mad with her deception, when I still hide my own magic techniques from the world.

“They are one in the same, the quicker you learn that, the easier this shall be.” Serenity had a completely different aura to her since that moment in the Hall of The Named. Normally she is only in teacher mode during lessons, but immediately after, she flips a mental switch and feels like one of my close friends, or possibly even a cool aunt. However, now, she has that switch turned back on.

“So then, the better dancer I become, the more adept I will be at magic?” Serenity’s eyes turn to a serious gaze. “It’s okay, my sister has known for years, with her sensory skills, I was never able to cast anything without her knowing!”

“No coincidence, you are heavy footed.” Serenity says while fighting back a chuckle.

“Hey now! I am probably the most elegant moving 6’6 man you have ever seen! Besides, I don’t think turning my knees outwards will particularly help with my magic.”

“It is why you can’t turn out your knees that you should focus on, or perhaps less.” Confused, I knew this was a sensei moment that I would have a revelation for at a later time. But for now, I couldn’t help but long for my own battle armor.

Sofia interjects my thoughts, “Well, anymore last-minute cuss-outs, or are we prepared to depart?”

I smile back despite still being saddened by leaving Coryn, I nod my head.

Sofia turns towards Serenity with a forming smile. I can feel the excitement is hitting everyone as we finalize our departure. What will this journey teach us? The opportunities are endless! “Are you familiar with Gateway Artes?”

“Yes my Lady, but is it not a custom of your people to pray to your own prospective God before any trial?”

Sofia lets out a slight chuckle and I say,

“Yeah Sere we only really pray to our Gods when we go on Trials with Mother, but sure I guess, it can’t hurt!”

Sere then stands tall with her legs crossed, she softly rests her back left fist over my heart and holds her right fist out waiting. “Wait? I thought you prayed to different Gods?”

“You will learn it is one and the same” I softly laugh and roll my eyes in jest. Standing behind her, I reach out and grab the back of her other hand.

“Our beloved Goddess of Serenity, we ask that you inspire us with your beauty, and project it into those close to our hearts. We ask that you give us the clarity to see the beauty in all things, today, and on our day of calling.” We break our stance and touch each other’s’ foreheads. I say to her,

“I see your beauty.” She says it back.

We turn to see Sofia already done with her prayer. It is a rather quick one, where she kneels and eats a piece of dirt. But hey, how one gets in touch with their Deity is not of my concern. “Which port are you using?”

She closes the lid on a water canister and responds, “I have some things that should be shipped into Tritania that may help out with our journey.“

“Sounds perfect!” I place my arms across my chest, “You ready?” Sofia nods, she holds out her hand out and spins it in a small circle and…

[bumblebookbeebzzz]

So I’ve noticed something...

So, when I start talking to my abled acquaintances about my own disabilities, it really, really throws them off if you talk about it in a positive tone. Do it, for the fun of it. Witness how it just completely throws them for a loop. An example: “Yeah, I used to only be in a wheelchair, you should’ve seen it I stylized it and everything, but now I’m able to walk longer periods without my crutches even! I only use them maybe twice a week now!” “O-Oh.. That’s... Great?” The look of ‘that is good, right?’ and panic while they assess just how much of a win that actually is in their mind. Like... I did a fucking Jesus magic trick and walk now but you’re still judging me for my use of crutches. Bye Felicia.

[andyerikson]

I presented my first Webinar today! As a part of the Marfan Foundation’s Empowerment series, with the wonderful and amazing webinar pro @katielovebomb! The video will be available soon if you missed the live taping :) #marfansyndrome #marfans #love #passion #purpose #presentation #zoom