Kalynne and Ian Jensen have been married for 11 years. They have three active children, ages 3, 6, and 8. She is a fun loving person and loves to spend time with friends and family. She is well loved by all who know her. She is a friend to everyone she meets. Kalynne's health has been a rocky journey since she was in high school. After the birth of her 3rd child her health got even rockier. She had good days where she was able to do everything that a normal woman her age could do and bad days where it was difficult to find the energy to get out of bed and perform even the basic functions of a wife and mother. She never knows what the new day will bring. One of her biggest desires is to have the energy and health to play with and care for her children EVERY DAY!
She met with doctors who were not very sympathetic to her problems and after running tests told her there was nothing wrong with her. She knew that something was wrong and was determined to find out what the problem was. She started researching her symptoms and was pretty sure she knew what was causing her problems but couldn’t find a doctor that knew enough about them to be able to give her answers. Finally in July of 2016 she and her husband Ian met with a knowledgeable geneticist and it was confirmed that she did indeed have what she supposed, Ehlers Danlos Syndrome (EDS) and he suspected Chiari and Postural Orthostatic Tachycardia Syndrome (POTS) as well. She needed to meet with a neurosurgeon and an electrophysiologist to diagnose the latter. All of her crazy unexplainable injuries, surgeries, and problems were starting to make sense and she felt like the puzzle pieces were fitting together at last.
EDS is a rare connective tissue disorder that results in faulty collagen throughout the body. Collagen is in the muscles, skin, bones, blood vessels, tendons, and digestive system. It's basically the glue that keeps the body together. A person with EDS has weak collagen and nothing can be done to strengthen it. Normal people can consume things to help strengthen and rebuild collagen but with EDS the body just keeps rebuilding weak collagen. As we age our bodies naturally begin to slow collagen production. That is what makes our bodies show signs of aging such as wrinkles, saggy skin, joint pain, etc. Those with EDS are on a fast track to deterioration, especially with joints and skin. There is no cure for EDS. People with EDS have to be very careful to avoid injury as much as possible. They can easily dislocate bones just by stepping wrong or sleeping in an awkward position.
POTS is a form of orthostatic intolerance that makes blood pressure and heart rate go up and down drastically when laying, sitting, and/or standing.
Kalynne's conditions are very rarely diagnosed or understood in the medical community. The geneticist encouraged Kalynne to join on-line support groups to find resources and suggestions for doctors who were knowledgeable on her conditions. After being blown off and ignored by so many doctors who didn't take her seriously and being told so many times that nothing was wrong with her and her symptoms were “all in her head” it was refreshing to have someone in the medical community tell her to seek out actual people who know and live her conditions.
Kalynne had MRIs done on her brain and spine. Two doctors told her, "all is clear, you are fine." However, she had been doing her own research and learning more information on her conditions. She asked for a copy of the MRI. When she looked at the MRI she could clearly see a Chiari Malformation and her brain stem was crowded. She sent her MRI disc to an expert Neurosurgeon in North Carolina who specializes in Chiari and EDS and he sent back a report indicating what he saw and told her a full neurological exam was needed.
Kalynne and Ian traveled out of state to see the doctor who specializes in Chiari and EDS. They paid 100% of all expenses for the initial exam because the insurance wouldn't cover it. They were willing to pay for that because they wanted his expert advice and opinion on her condition. They wanted to hear from him what was going on with her and why she was feeling so poorly and in so much pain. They met with him for 2 hours and learned so much about her condition. He took the time to talk with them about her symptoms and the best course of action. He told her, “It is all in your head, literally!” She needs brain surgery! With her Chiari malformation the lower part of her cerebellum is pushing downward below the skull opening. This malformation is restricting communication to everything in her brain because it is so squished. Her brainstem is tilted and torqued because of the malformation. She needs brain surgery to relieve the pressure and open the communication to her brain.
At this appointment they learned Kalynne also has degenerative disc disease, mild scoliosis, low muscle mass, diminished sensitivity to nerve sensation, and dysautonomia. All of these are due to the Chiari, EDS, and POTS.
EDS and Chiari Malformation are often seen together. Chiari has many symptoms and it affects everyone differently, making it even harder to diagnose. The symptoms make it difficult to do basic day-to-day activities because the body has to work 4 times harder with every task. The doctor compared it to a car with a wheel off balance and how all the systems have to work harder to compensate. Kalynne struggles with constant fatigue and pain as her body is fighting itself. There is no cure. Decompression surgery is the only treatment available to make room in the skull and allow proper CerebroSpinal Fluid (CSF) flow to reduce further damage. Kalynne’s doctor is confident the surgery will significantly increase her quality of life!
Initially the insurance company told Kalynne that they would cover the surgery out of network and she would just have to pay her max out of network rate. Surgery was scheduled for February 1st, but just 9 days before the surgery Kalynne was informed that she would have to pay the max out of network rate plus 75% of all acquired charges. Those charges have to be paid up front, before the surgery! The doctor bills alone will be a minimum of $50,000 if all goes well and the malformation is as they suspect. That does not include the hospital bills or any other related charges. She will be in the hospital for 3 days and then in a hotel for 3 days before being cleared to fly back home. She lives in San Antonio Texas and the Surgery is in North Carolina. She will have to go back to North Carolina six weeks after the surgery, again in 6 months, and then in 1 year for her follow up care. Hopefully there won’t be any complications!
We are doing a fundraiser to help Kalynne with her expenses because she is not getting the needed help from her insurance. Our goal is $100,000.00. We are trying to get a large portion of the funds raised by February 12th, her birthday. Brain surgery would be a great present for her! If you are touched by her story and would like to help make her surgery a reality, please share this with your family and friends and donate to her fundraiser. No donation is too small. We’re praying for a miracle!!
Date: Saturday, June 10th 2017
Time: 11-3 PM
Location:Highmark Charter School2467 E South Weber Dr, South Weber, UT
Next meeting TBA!
Brenda Mumford--Hope all goes well with the surgery - better days ahead. hope all goes well with the surgery - better days ahead.
Lisa Woodbury--Good Luck With Everything! We love you!
Natalie and Jason Conforto-- We love you, Kalynne!
Emily Clark-- You got this!
Janeen Parry-- You're in our thoughts and prayers, Love you!
Vanessa Somerfield-- Happy Birthday....I love you
Larry & Ginger Christensen-- Sweet Kalynne, we love you and are praying for you and your little family. <3
Jerry & Lynette Smith-- We're praying for you, Kaylynne!!
The Hensley’s-- Sending our prayers and love your way!