Please read below for my personal story or visit the link for my interview for the Huffington Post with images by David Norbut.
[Please note that at this time, we are unable to mail reward gifts, but you may pick them up from a location in Sarah's area. Thank you.]
October 10, 2013
First, our goal is to raise enough awareness and funds through this site & at our December 7 Fearless Fundraiser so we can apply for a 501(c)3 non-profit status in order to help others with this and other related illnesses not covered by insurance.
Here is a tiny piece of my story and a video as to why I am reaching out for help.
On September 7, 2013, I went to the emergency room for the second time in three days with mysterious symptoms including seizures, memory loss and an inability to speak - not to mention a myriad of other ailments ranging from joint and muscle pain to gastrointestinal issues.
Attached is a video my husband captured on his phone while I was waiting to be admitted to the hospital for tests. Unfortunately, that never happened. I was refused an MRI, review by a neurologist or any test. I was sent home with three doses of Lorazepam (Ativan) and discharged as having Conversion Disorder, a rare psychiatric reaction.
Not accepting this as an answer, and following worsening symptoms after a flu-like episode in June that had me in bed all summer, we decided to further investigate. After several doctors and numerous tests, I was finally diagnosed with Late-Stage Neurological Lyme Disease and several co-infections, which had begun to attack my nervous system after nearly 25 years going undiagnosed.
I had experienced numerous ailments since childhood that were dismissed or misdiagnosed as Fibromyalgia, Irritable Bowel Syndrome, Chronic Fatigue Syndrome, Premenstrual Dysphoria Disorder and countless other non-specific illnesses. Following two miscarriages, fainting spells, debilitating fatigue/pain, and surgeries to remove mysterious cysts, we still didn't have answers as to what was the cause.
Now we are extremely relieved to have an answer and an opportunity to pursue a successful course of treatment. I was also able to receive anti-seizure medication and now take nearly 40 pills a day including vitamins, minerals and supplements to get my body prepped for the long and difficult journey we now must face.
This is a long way from my days being an artist, skating roller derby, running my own business, throwing fundraisers for numerous charities and managing long hours in several management positions. But I have been given an opportunity to learn about this disease and hopefully help others who are suffering.
Luckily, the treatment I need has an 80%+ success rate, but is intense as it requires 7-9 months of intravenous antibiotics through a surgically-placed chest port for maximum entry to the bloodstream. Some liken it to chemotherapy and patients are often unable to work, drive or function while the anti-Bs do their work.
But I am FEARLESS, tenacious and up to the challenge, so I've got the healing part covered! Unfortunately, what isn't covered is the cost of treatments. Due to the current CDC guidelines, Chronic Lyme Disease is not recognized nor covered by insurance.
The treatments are very costly (an average of $75,000-$100,000 over a year), so we are asking for a little help to offset the financial burden. I am grateful for any and all support, especially from my friends and family who have already done so much to help me through this.
And after I make it through, I plan to place much of my energy into building awareness and raising funds to help fight this disease so that no one else need suffer. My thanks and gratitude to all of you, especially for listening.
Blessing to all,
FEARLESS illustration by Anahata Katkin
anahataart.com + papayaart.com
UPDATE: 11.06.13 at 1:10 am
Dear Friends, thank you again for ALL of your support for Fearless : A Fight Against Chronic Lyme Disease, and please know that we need it NOW more than ever, especially in raising awareness for this disease!
I for one had no idea how intense it could get...Monday morning, I was rushed via ambulance to the hospital during a seizure with painful blisters on my hands. I was kept overnight for observation and discharged Tuesday morning.
That evening, I began experiencing a burning sensation and found a raised red rash all over my body. My husband took me back to the hospital where experienced yet another seizure in the ER. I was treated with IV steroids and am finally home now. This was my 6th hospital visit since June, amongst numerous Dr visits and hundreds of tests.
We are now a month into treatment and all I know is that my body is fighting back! But we still have a long road ahead and would so appreciate if you could please share, like, and tell everyone you know to help raise awareness for this affliction. And, of course, help us have an awesome party on 12/7!!!
Please PM me for opportunities to earn FREE tix through volunteering or donating to the silent auction.
FearlessLY ME, Sarah
November 20, 2014
A message from Sarah's husband, Kevin:
It has been over a year now since Sarah was orginally diagnosed with Late-stage Neurological Lyme. She had a PICC line inserted last November, but it was pulled in March after insurance refused to pay for the much-needed IV antibiotics to go in it.
The amount we raised was not enough to cover the out-of-pocket expenses and our entire savings are gone. We have faced foreclosure, but have received so much generosity from friends, family and the community to help us get through the hardships so Sarah could continue with oral antibiotic treatment.
We have seen some improvements, but she continues to have violent seizures intermittently with debilitating fatigue and intense pain every day. She spends most days entirely in bed and unable to move about without assistance. She wanted to go out for her 36th birthday on December 4, but realizes this isn't a realistic option. Just getting to Dr. appointments has been a challenge, and she can crash for days after too much physcial activity.
It has certainly taken its toll on our relationship, but we both have faith that she will continue to improve. The unfortunate part is that she has been denied Social Security Disability Income after being out of work for over a year. The waiting list for a hearing is 14+ months.
To get this expedited, we have enlisted the help of Delaware's Congressman Carney, and hope others will reach out to their government officials to get the needs of Lyme victims recognized. Please do so for Sarah's sake and the sake of others, as Late-Stage and Chronic Lyme disease continue to be ignored as true illnesses and insurance will not pay for treatments.
Hopefully, with your help, we can get better faster and continue treating Lyme and its coinfections with the best methods based on hard-evidence research, as there is still no cure.
If you wish to donate directly to Sarah's fight, please do so here. Otherwise, please consider making a tax-deductible dontation through the Delaware Community Foundation to Fearless Lyme Fighters, The First Lyme Awareness Fund in the First State.
Thank you so very much for your generosity and compassion towards this cause.
R. Kevin Davenport
- Eva Baker
- Julie Van Blarcom
- Terri Piser
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