Locals come together to help woman with rare illness

How do you explain to someone that you have a depilating disease that they cannot see, but it is the reason why you can’t stand up to shake their hand? One local Plains woman could come close to explaining just how close to the truth that scenario is.

Vanessa Harvey, a home grown local woman is getting set to see out of state specialists about her recent diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS).

For eight years Vanessa has been back and forth to doctors suffering from a range of issues like seizures, dizziness, vomiting, tremors, body temperature regulating issues just to name a few.

In her sophomore year at Plains High School, her symptoms got to a stage that was so bad that she ended up spending 3 weeks in the Seattle Children’s Hospital.

More recently Vanessa within the last 5years has had 3 life line flights due to her condition reaching extremes that were unable to be managed at the local hospital.

Her mom, Tiffani Weatherly said, “That even though she was there, they had no idea of why she was so sick. They tried to treat the symptoms because they didn’t know what the cause was.“

“It’s hard for people to understand if they can’t see the problem, it’s not like you can see POTS like you can a broken leg or sitting in a wheelchair,” said Weatherly.

Doctors have explained that in most cases, one of the hardest parts for people to wrap their heads around is how the Autonomic Dysfunction is a large part that contributes to a number of symptoms related to the disease.

In order to really understand the various forms of dysautonomia you should know how the Autonomic Nervous System (ANS) works.

ANS is broken into three main parts, first is the centre of the brain in the medulla oblogata and hypothalmus. The other two parts are found in the peripheral nerves; the Sympathetic Nervous System branch and the Parasympathetic Nervous System branch.

What this equates to is at any given time, if Vanessa wants to stand to go somewhere, the ANS within her body works against her.

When a normal person stands gravity is displacing blood downwards, your brain registers that. It then tells your heart to beat a little faster and a little more forcibly, and tells the blood vessels in the lower part of the body to become three times tighter . That tightening is what helps push blood towards the upper part of the body.

Those diagnosed with POTS like Vanessa either cannot make or maintain that tightening of the blood vessels. So blood is pooled by gravity in the lower portion of the body.

This makes simple tasks for Vanessa such as standing or enjoying a short walk, even climbing one or two stairs an extremely difficult and warring task.

As you can see POTS is not just a disease that encompasses one or two things, it is classed as a syndrome as well by medical professionals. With patients usually taking on a ‘zillion’ other possible symptoms as described through an awareness video (What is POTS Dysautonomia International2016 on Youtube.

On top of the POTS, Vanessa also suffers from Fibromyalgia and Rheumatoid arthritis, all at the age of 21years old.

“It can be mixed emotions at the moment when we think back to what Vanessa missed out on in her teenage years, and what she will miss out on in the future. Purely because of POTS,” said Weatherly

“Now that we know what the problem is, we [family] are able to help Vanessa a lot better, we can research and help her create a better quality of life,” she added.

Weatherly explained that some days for people who are diagnosed with POTS, feel like they are trapped within their own body. Even simple tasks such as going to the grocery store, playing fetch with your dog, or going to the mall can completely exhaust them.

“One good day generally will turn into three bad days, it can be an unfair give and take for Vanessa some days,” added Weatherly.

Compared to other medical conditions POTS is still relatively new as far as awareness goes. With research funding only receiving 1/100th of funding compared to other known diseases, there is a lot that people still don’t know.

“There are a lot of doctors that have no idea how to diagnose POTS. We went to many doctors, some tended to be cruel because they honestly thought she [Vanessa] was making things up,” explained Weatherly.

“It was around 4 months ago that Vanessa went to see Dr. Spoon in Missoula (a cardiologist) and that’s when she got the diagnosis that she had POTS,” she added.

The diagnosis was a relief not only for Vanessa but for her family as well. Since then they have been doing their own in depth research to better understand whats happening.

“We are doing this fundraiser to help Vanessa get to the Mayo Clinic in Minnesota. This is the crucial next step,” said Weatherly.

Money raised from the fundraiser that is being held on August 13 at the Sanders County Fairgrounds in Plains, will aid in expenses such as flights, accommodation and travel to and from the hospital.

Vanessa will meet with a panel of four specialized doctors that will look at four specified areas of her body. From nutrition to her nervous system and all in-between Vanessa will be able to take further testing so she can better her daily life through their recommendations.

Vanessa could spend up to 3 weeks in the Minnesota clinic. She’ll be accompanied by her mother and depending on the length of time spent there her father will travel to her if need be

“We’re [Vanessa and family] are hoping that with this next step, we can help her gain some independence back with how she can better manage her condition. Vanessa would love to go to work and contribute to the community like everyone else,” said Weatherly.

Though don’t be fooled. Vanessa may have had set backs because of POTS, but that hasn’t stopped her from taking those opportunities to enjoy life when they presented themselves.

Adding that though she has more bad days than good, Vanessa and husband Ethan like to go on drives exploring the county when they can.

The just recently this year visited Mt. Rushmore and we’re told they had an absolute ball.

“She was so happy that they had elevators at the viewing stations so she could experience the site like everyone else,” said Weatherly.

With the fundraiser just around the corner, it will be a fantastic back yard feel for those who attend.

The Spaghetti feed will be donation for those to enjoy the meal. There is no specific donation dollar as Vanessa understands that some people may not have a lot to give.

Local ice-creamery Ripples Ice Cream Parlor is donating some ice-cream for the events dessert. Dessert will cost just $1.

There will also be a silent auction with plenty of great items up for grabs. Painted Lady Cosmetics has donated a voucher for services to the value of $575. Chad Cantrell also donated a fully paid course for safe gun handling. Even a local farmer is donating a ‘kid’ goat!

With many local businesses coming on board for donations it will certainly be the fundraiser event of the month. Other businesses on board are Mangy Moose, McGowan Grocery, Mountain West Clothing.

Even some very talented locals have created some hand made home decor items that are sure to be a big hit.

Vanessa is still taking donations for the silent auction, if you would like to know more you can contact Tiffani Weatherly: tweatherly1@farmersagent.com

“We understand people don’t have millions to give, we’re just hoping for a good turnout so we can give a little financial ease to Vanessa and Ethan to ensure she gets the treatment she needs,” said Weatherly

- At the time of the interview Vanessa (who was unfortunately unable to attend) was gifted a years worth of vehicle services by Gary’s Auto.