McKenze Messman Fight with Ehlers Danlos, POTS, and Mast Cell Disease

03/08/2021

Just saw this in my local POTS group.

Wow! More and more awareness! Do you all remember Mara as a little girl in Mrs. Doubtfire, Matilda, Miracle on 34th Street?

23/06/2021

Another great awareness piece!

Jeopardy! just experienced a teachable moment.On Monday’s show, one of the clues in the “Plain-named Maladies” category, was: “Postural Orthostatic Tachycardia Syndrome is also known as Grinch Syndrome because this organ is too small.” (The answer ruled correct was “What is the heart?”...

22/06/2021

From the post below, this is pretty cool! Fox News

“Jeopardy!” viewers are upset with the show after it included a medical clue that many argue is incorrect and even offensive.

22/06/2021

It’s been a while since I have posted. I haven’t felt well at all for a while and I will update everyone soon but I wanted to share this as someone who suffers debilitating and disabling POTS and how wrong was today! This was information from way back before most of us had even heard of

POTS doctors, neurologists, cardiologists for the most part have come a long way in knowledge but this doesn’t help those of us that need quick treatment in the medical world. I think Jeopardy needs to fix this fast!
Jeopardy!

Hey Jeopardy! no one with any credibility calls POTS "Grinch Syndrome." Promoting outdated misogynistic terms to describe a debilitating autonomic nervous system disorder that impacts millions of Americans and other people around the world is not cool. We request an apology on behalf of our community. Do better.

Can you imagine Jeopardy making light of cancer or MS patients with a "funny" name for their debilitating health condition? Not acceptable. We'd love to see real questions about the autonomic nervous system.

26/12/2020

Merry Christmas to all! It’s been a while since I posted. I have really been focusing on my health and trying to find a balance after such a tough beginning of the year with being in the ICU

I was then diagnosed with generalized epilepsy, caused by a AVM and getting antiseizure meds. I was doing really well for a good while and even was cleared to start driving! I was extremely happy! That’s a goal of mine. Went 4 months seizure free!!! However, that was short lived and I am struggling once again with my seizures. They are getting more frequent and need prayers to get these under control. I know all the prayer warriors always bring me such comfort and strength!

I do see a neurosurgeon soon to figure out what he suggests to do with my AVM.

Hugs and love from Makki and I this holiday season!

👇I guess if I can’t drive, Makki will🤣😂💗👇👇

10/12/2020

If you know anyone who has these symptoms, please direct them to us. We would love to plug them into the correct areas of support.

29/11/2020

Great EDS awareness! has many different types and so many symptoms. If you are in the Nebraska area, we have a great program at UNMC. Monroe Meyer. This year through genetic testing, I was diagnosed with classical Eds or .

https://www.healthline.com/health-news/sia-has-rare-chronic-condition?fbclid=IwAR2RGW5Da8wNF6dArLHbom8Vcxd_TUm9TWIbiar9Zoa37jIAhrkzlYbva1Q

Australian singer Sia tweeted that she has Ehlers-Danlos syndrome. The condition, which is rare, affects the connective tissue within the body.

24/06/2020

Oh wow! A ton prayers for this breakthrough!

There is no cure for POTS and up until recently, scientists did not even known what caused it.

24/05/2020

For all my friends with food allergies, mast cell disease, celiac disease, anything that can be dangerous
😳😳😳
When in doubt call the manufacturer!

https://www.fda.gov/food/cfsan-constituent-updates/fda-announces-temporary-flexibility-policy-regarding-certain-labeling-requirements-foods-humans?fbclid=IwAR2n-rgHINvztaTlj1RcwjWyGZmvUrb1nNRCLw4L3EicKCXGixAgbvIJnPk

FDA is issuing a guidance document to provide additional temporary flexibility in food labeling requirements to manufacturers and vending machine operators.

03/05/2020

It’s here again! The month of May is Ehlers Danlos Awareness Month!!!

I was born with a genetic condition called ehlers danlos syndrome...this is a rare condition where the body makes faulty collagen. There are 13 types of EDS. I have the classical type.

To some, it may seem just dislocations or stretchy skin, pain ect.

But its more than that. In the past 18.9 years I have endured many obstacles. We spent years trying to figure out my migraines, pain, ect until I was 14 my EDS went crazy. I have gastroparesis , many dislocations, MCAS where I’m allergic to everything, epilepsy, sub ventricular tachycardia which also can cause seizures, severe POTS (postural orthostatic tachycardia syndrome) and many more issues. The list keeps getting longer each year.

We need a treatment, a cure! The pain people with EDS have to go through is a real struggle and a side most dont show. It’s not just physical it’s also Financially, and mentally, exhausting for all the loved ones as well. This month, please watch for information and awareness. Please reach out to me or my mom if you need help with doctors or support!

30/04/2020

To all my MCAD friends!!!

If I go to the hospital, how will I explain to the doctors that I have immune issues, like MCAS, and will the doctors understand how to address it? What should I tell them?

Dr. Afrin is back on our page this week with another answer to your COVID-19/ MCAS question. His answer below:

In this age where the vast majority of the world's doctors have never even heard of MCAS let alone have any meaningful degree of familiarity with it, all one can do is inform the doctor that one has long had a chronic condition in which one's mast cells are excessively activated, causing a wide, multisystem range of inflammatory and allergic/reactive-type problems -- and thus that it's easily possible that the inflammatory reaction to the COVID-19 virus in that person's body may be even more heightened than a usual inflammatory reaction to a virus. (Importantly, note that this is a different concept than how *susceptible* one is to contracting an infection with the virus. An MCAS patient's *susceptibility* may be no significantly different than anybody else's susceptibility -- the virus is remarkably infective/contagious, no matter what type of patient one is talking about -- but an MCAS patient might be at higher risk for suffering an abnormally greater inflammatory *reaction* to the virus than anybody else's reaction.)

Plus, there of course may be risks in some (certainly not all) MCAS patients for reacting to some of the medication products which the patient's doctors may try to use to help control some of the symptoms (of the infection and of the body's inflammatory reaction to the infection). Thus, a courteous caution (by the patient or a family member or attendant) to the patient's doctors that if "unusually exuberant," and "difficult-to-control," inflammation is seen in the MCAS patient who has contracted a COVID-19 infection, then the doctors should *quickly* consider trials in the patient of medications aimed at suppressing mast cell activation, such as both H1 and H2 antihistamines, leukotriene inhibitors (such as montelukast or zafirlukast or zileuton), cromolyn (especially nebulized cromolyn if respiratory issues become significant), non-steroidal anti-inflammatory drugs (NSAIDs, unless the patient has previously demonstrated intolerance of such drugs), other types of anti-inflammatories (such as ketotifen and quercetin and luteolin and cannabidiol, among others), vitamin C (and possibly also vitamin D), benzodiazepines, and other mast-cell-targeting drugs.

In severe cases, certain very expensive anti-inflammatory drugs, such as JAK inhibitors and interleukin-6 antagonists and interleukin-1 antagonists, might be reasonable to try, too. Furthermore, although *ordinarily* a cautious approach to such medication trials ("one by one") is highly recommended in MCAS patients (because of (1) the challenges in identifying the particular culprit if multiple medications are started at the same time and the patient has a reaction, and (2) the risks in many MCAS patients in reacting to the excipients in medication products), in the setting of a rapidly worsening COVID-19 infection there just won't be the time for such caution and it will be OK to try initiating multiple such treatments (for example, H1 and H2 blockers and cromolyn and montelukast or zafirlukast or zileuton) all around, or at, the same time. Yes, if the patient then unfortunately demonstrates an adverse reaction to such a new cocktail, it will become quite a challenge to identify which component of the cocktail is causing the trouble, but, again, in the setting of a rapidly worsening COVID-19 infection, there often just won't be sufficient time to permit introduction of new medication products into a patient's regimen one by one.

If the patient is having trouble which the patient or close ones recognize, through the greater experience they have had with the patient than the patient's doctors at the time might have had, as more likely to be heightened symptoms of mast cell activation (MCAS) than any other process and yet the patient's present doctors do not appear to be giving serious consideration to the potentially important role that mast cell activation might be playing in the patient's total picture of illness at that time, then it would be very reasonable to ask the patient's doctors (again, courteously; there's just nothing productive that's ever going to be accomplished by getting hostile with any doctor, and such an approach could easily wind up being *counter* productive) for an urgent consultation with an immunologist, as there is some chance that immunologists (or allergists/immunologists) might be more familiar with MCAS than other types of doctors.

As is the case in general for MCAS patients, guidance for MCAS management in COVID-19-infected MCAS patients will need to be provided on an individualized basis.
We are happy to speak with the other emergency room medical physicians attending to any of our patients at this time who may be infected with COVID-19; all they need do is contact us.

Although we have to prioritize care for our established patients, we are happy to speak with other health care providers (doctors or otherwise, even if they are attending to patients who are not established with our own practice) who would like to understand more about mast cell activation disorders such as MCAS (for example, if they need urgent counsel on how to treat a COVID-19-infected patient who appears to be suffering severe inflammation from mast cell activation syndrome).

-Dr. Lawrence Afrin

*Editorial Note: Please note, this is the only headshot we have for Dr. Afrin at this time. While he is smiling in this photo, he is certainly not smiling about COVID-19. We would ideally like to use a non-smiling photo with these posts but this is the only photo we have. We are doing the best we can during these uncertain times. Thank you for your patience and understanding.

08/04/2020

https://medium.com//what-people-with-chronic-illnesses-can-teach-you-about-covid-19-db9fc4167d07

A virus is sweeping across the globe. For many, if not all, this is an unsettling time — empty grocery shelves, lifeless university…

29/03/2020

this is true! We joke and say we have prepped for this for 5 years!
It’s still not much fun BC we miss people, friends coming over and our coffee times. Not to mention, Makki is so bored!

Virtue hugs to all! Stay healthy, keep safe!

15/03/2020

By staying home, distancing yourself, being proactive, you are helping people like us and most of my family!!! Praying for all!
👇👇👇👇👇

05/03/2020

My MCAS Doctor, Dr Dempsey on the

This is for those with chronic illness!!!

28/02/2020

Today is rare disease day! Thank you to all of you for being so supportive with my fight! It’s been a tough one lately! 💗💕

10/02/2020

Heart disease is the leading cause of death among adults in The United States. Every 40 seconds, someone in the U.S

02/02/2020

Yup👇

😁Trying to manage multiple diagnoses is often like trying to keep three hungry velociraptors at bay.

25/01/2020

Epileptic seizures... ✔️
Dysautonomia seizures... ✔️🤷‍♀️
Cardiac seizures... ✔️
Can anything be easy?😢

I’ll update when I am feeling better. Thank you all for the prayers, love and support.

🤯👉 Many of Potsies talk about SEIZURES, either simple or more complex, that happens every once in a while or more regularly for some.

🙋‍♂️🙋‍♀️Let's see how common is seizures among Potsie.

06/01/2020

05/01/2020

A Waverly teenager is allergic to almost everything - from chocolate to direct sunlight.

03/01/2020

If I get past today, I will break my streak of having a seizure every other day! 😂

31/12/2019

When I can’t do anything on New Years Eve because I’m recovering from a horrible seizure from the night before and my friends bring gifts and hang with me instead! Best people in the world plus my mom, dad, and brother! 💗💕 Prayers for me to recover quickly! 💗

Hope everyone has an amazing and safe Nee Years!!!

23/12/2019

This post is for my Makki and a little service dog awareness!

I’m so grateful for her!!! She never misses a day where she is needed! Shes been watching me closely the past few days... She’s always alerting, making sure I’m resting when I can, makes me sit down when I need to to make sure I don’t hurt myself fainting or having a seizure.

Today she was right there for me to tell me to sit. I was on the stairs, I sat down on the top of the stairs and my brother came in front so that I wouldn’t fall down and luckily I went down in the hallway. I did face plant and had a bloody nose but the fall would have been way worse on the stairs.

22/12/2019

This is a great program if you are a health professional in any field who takes care of patients. From physical therapy to the more specialties of neurology ect.

22/12/2019

One month ago, VCU Pharm.D. student Camille Schrier won the title of Miss Virginia with the help of her science-related talent. Millions have seen her story. But not many people know about the genetic condition she lives with that inspired her career in science. Watch our exclusive video to learn mo...

19/12/2019

Hi everyone... once again I obviously have been feeling pretty rough. 😞 Pain, migraines, fainting, lots of allergic reactions and then the normal POTS flares. I’ve been managing well though and keeping up with my friends, commercial modeling for a agency in Omaha. It’s been a lot of fun! Also keeping up with all my doctors, tests and all that.

Holidays are particularly hard due to extra business, stress, other triggers with illness. Most of my support boards are giving tips for the holidays. Holidays are tough...I can't be around a lot of people, so we see just a few at abtime and I’m so grateful they all are supportive and understanding. With POTS, and MCAS.... we all just need a little extra understanding! I need a lot of rest, extra extra rest!!!

I have everyone keeping it cool in the house, (which my mom HATES!) but she does it for me with her heater by the bed, and a heating blanket on at all times🤣🤣🤣.

Foods are low histamine, abounding all my triggers ect.

If you know someone with a choronic illness, give them the extra understanding as I am lucky to have:). Each day is always a new day of different struggles:). Hope everyone has an amazing Christmas!!!!

The holiday season is traditionally a time for joy and celebration. Family and friends gather together. Homes are decorated, parties are planned, and gifts are…

12/12/2019

Learn more about MCAS with my specialist Dr Dempsey!

This webinar is not a substitute for medical advice, treatment, diagnosis, or consultation with a medical professional. It is intended for general informational purposes only and should not be relied on to make determinations related to treatment of a medical condition. Epidemic Answers has not veri...

05/12/2019

Wow! Can’t wait to see this! I totally relate to the “pretending” to be ok when everyday is a struggle. I don’t broadcast my bad days as much and fake through the ok days. People see me and see that I look normal unless I’m using my wheelchair. Please tune into this and help others and raise awareness! Even after 4 years, doctors still don’t understand it.

Summer Dashe shared a story she was terrified to tell in hopes of helping others. She shared the story of her POTS diagnosis. Since it aired, she has heard from thousands of people who have been touched by it. On Wednesday on ABC15 News at 6, you're going to hear the stories of so many others with t...