SMAS Day 2024

Today is purple day in the Jackson household, but not because the Ravens are playing. Today is SMAS Awareness Day. Each year, I try to give a glimpse into Jayde's journey with this disease. Superior Mesenteric Artery Syndrome. What can I tell you that you haven't already heard? SMAS is so much more than nausea, pain, vomiting, and weight loss. This disease is relentless, it's frustrating, and it is heartbreaking. That is on a good day, and I am only the mother and caregiver. Yes, those are two very different roles, and I will be the first to admit that on the bad days, I find it challenging to figure out where one begins and the other ends. 

About a week ago, I told a dear friend, "If I don’t answer when you call, it's because I am having trouble getting my arm out of the straight jacket."  The culprit of my most recent spiral into madness—Jayde's port. Along with her many illnesses, Jayde has Factor V Leiden Mutation. This is a genetic mutation that causes blood clots. When Jayde's port gets a clot, there is a detailed routine we must follow to remove the occlusion. Over the past three weeks, I've lost count of how many times I've accessed her port, attempted to push heparin, and tried to get blood return. Each time we needed it, Jayde-Rhiannon took on the tedious process of mixing the vials of the clot-busting medicine. In total, she mixed eight vials. It is her way of having a small hand in her own care.

We had multiple phone calls and visits with Amber, Jayde's nurse, and an x-ray to ensure her port was not dislodged. It was three long weeks with no blood return and a clot sitting in Jayde's chest. All the while, I'm praying it doesn't move. We were out of options. Last Monday, I broke down and made a phone call to the surgeon to have her port removed and replaced. Friday was Jayde's consult with the surgeon, except late Thursday evening, I dared to ask, "Can I try to access you one more time before you see Dr. Vabi?" After the hell her tiny body had experienced, I expected a resounding no, but she surprised me. It was almost 10 PM when we saw the crimson color flow through the line. Excitedly, I called Amber. The 10 CC syringes of clots began piling up on the medical table. We pulled out six syringes. Then, as quickly as the blood flow began, it just stopped. Jayde and I may have shouted a few choice expletives. If you watch Friends, think of the episode with Phoebe and the video game. Fortunately, by 11:30 the blood clot was no more.

You may be wondering what connection Jayde's port has to her SMAS. Although Jayde's surgery five years ago, allowed her to finally eat and made it possible for her to gain a modicum of weight, it could not eradicate her many other illnesses, such as her POTS and EDS. Proper hydration is crucial in managing these illnesses. However, because of SMAS, Jayde cannot intake the appropriate amount of fluids, and she has malabsorption issues. Thus, the necessity of her port. It's all a tapestry where the ABCs of Jayde overlap.

Superior Mesenteric Artery Syndrome occurs when the angle and distance between the superior mesenteric artery and the abdominal aorta fall below the threshold, compressing the duodenum. This compression causes nausea, vomiting, distention, burping, weight loss, malnutrition, and severe abdominal pain. For Jayde and many others, SMAS is also accompanied by Nutcracker Syndrome (NCS). NCS is the compression of the left renal vein, which supplies blood flow to the left kidney and provides its own challenges.

The stark reality is that .013% of the world's population has Superior Mesenteric Artery Syndrome, and one in three will lose the ultimate battle to this illness. Although .013% seems like a small number and one in three is only one, if someone you loved with every fiber of your being was part of that .013%, what would you do to ensure they were not the one in one in three?

This day is not a celebration. It is a day we honor those who courageously fought their battle but lost. It is a day to call for awareness and give hope to those still bravely fighting a war so rare that most physicians are oblivious to its existence. It is a day when the .013% are reminded that their lives and their fight matter. No matter how rare their illness is, it is still not too rare to care. 💜  

#jrsjourney #SMAS #SMASyndrome #SuperiorMesentericArterySyndrome #smasawareness2024 #SMASwarrior #NotTooRareToCare #zebralife


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