The story of Kayla
I am 18 years old and live in Clio, Michigan. I have Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Activation Syndrome (MCAS), Hypermobile Ehlers Danlos Syndrome (hEDS), and Median Arcuate Ligament Syndrome (MALS). These conditions have taken over my life.Â
Out of all my conditions I have to say POTS is the most debilitating for me. That is because in February 2019 I started fainting 30-40 times a day. And when the passing out started it wouldn’t stop until I got my fluids in ER. I literally would come to and if I moved at all I was out again. That is because when I moved all of my blood in my body went to my feet leaving my head bloodless. I still currently get fluids twice a week from my in home nurse and on top of medications we have a decent handle on this condition.
Mast cell activation syndrome or MCAS is literally where my mast cells attack my body because they are overactivated and think everything is a danger to my body. I cannot be in the same room with a latex balloon, a nut, a candle, perfume, cleaning supplies, flowers, hand sanitizer, ect. All of these items cause me to go into anaphylactic shock. There was a time I went to a store this last month and it threw me into anaphylactic shock from the store and I was gasping for air. This condition is so hard to have because you have to be so cautious going into public. This condition made me graduating high school so challenging and thanks to a supportive family, administration, and teachers I graduated with honors.Â
Another condition I have is HYpermobile ehlers danlos syndrome. This is where my body lacks collogan. This disease causes me to dislocate things all the time and be in constant chronic pain. And unfortunately due to my MCAS i cannot take any pain meds because my body will go into anaphylaxis. I pretty much just have to learn how to deal with the pain. EDS has caused me to develop Vocal cord dysfunction and that is where my vocal cords randomly close and shut my air ways off.Â
Lastly, MALS is a new diagnosis for me. I struggle to intake any food or liquids orally without getting severe pain and getting super sick and that is because my median ligament presses too tightly on the celiac artery which delivers blood to the stomach and liver. I had a celiac block to help right after Christmas and it helped greatly and anytime now i am due for another one. After that they will operate and burn the nerve right off.
As you can imagine living with these conditions are stressful and crazy hard but what makes it harder is when people don’t understand. I have enough to handle and I need support. Instead of staring at me in the grocery store for being in a wheelchair and wearing a mask just smile. In high school the amount of people not believing me was just insane and I am making this to share my story. This rare disease day stand up for the chronically ill. We need your support to get through this.
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