Life of Hope

While there is life, there is hope!

I know it has been a while since many of you have heard from me. Here’s why: 

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I was diagnosed with Ehler’s Danlos Syndrome (EDS) – Hypermobile type in January 2016. This is a connective tissue disorder that makes the collagen (one of the most abundant proteins in the body) looser than the norm.  This diagnosis came after a full year of sickness, doctors’ visits, my body rejecting everything, and many misdiagnoses and “you look fine” answers from doctors who didn’t know any better. I lost 30 pounds in 5 weeks.

In the 2 years following, I accumulated a multitude of diagnoses (see descriptions below) all under the umbrella of EDS. This syndrome is forever. There is no known cure and I will live with this for the rest of my life. I am so thankful for the technological advances we have at our disposal today. I had a gastric neurostimulator placed in my abdomen mid-June 2018 that is connected to my stomach to send signals to my brain to decrease nausea in efforts to better my quality of life. Because my stomach does not break down food, pills, or even liquids well, I have had to find alternatives to common medicines, most coming in an intravenous (IV) form. August 2018, I had a central catheter (PICC line) placed to have IV fluids and medicine administered. In my most recent hospital stay, my primary care physician and I found medications that are going to be beneficial next steps for me. This doctor specializes in EDS – one of the few in the world! He is a blessing to have on my care team and definitely needed in my current state.

Next steps for me include using my permanent disability parking placard, rolling walker, and wheelchair to be as active as I can. I will continue to see the various medical professionals (physical therapist, psychotherapist, nutritionist, acupuncturist, and specialty doctors) for continued care. I plan on finding a service dog to help with mobility/stabilization, picking up dropped items, alert for seizures and POTS attacks, and perform deep pressure therapy. In January 2019, I am going to be meeting with a Clinical Geneticist to rule out any other forms of EDS and see what other things can be found from a genetic standpoint. In July 2019, my goal is to attend the national EDS Global Learning Conference to continue educating myself and share my story with others. 

Unfortunately, at the end of September, I was let go from my part time job due to my many medical absences. I am in the process of getting on disability because there are not many jobs I can physically do at this point. I am trying all forms of therapy before (and hopefully never) having to use total parental nutrition (TPN – nutrition through IV) or surgical feeding tube.

If you have made it to the end of this post, thank you! Thank you for reading my story. EDS awareness is my biggest goal. Awareness is the only way for better diagnosing and treatment options will be available so others don’t have to go through the excruciatingly long process to find answers like I did.

Over the last few years, my medical bills have piled up and have not had a break. It is very expensive living with these diagnoses as I have had many specialized testing done, multiple hospitalizations, and most treatments are alternative and not fully covered by insurance. Therefore, I am not asking for help, only providing a place in which you can help if you are moved to do so. First funds will go towards current medicines and medical bills. Please see the chart below to know how contributions will be utilized. 

I know my current state will not last forever, I will get better; we just have to figure out how to maintain a good quality of life with my fragile body. With the help of new IV medicines, an appetite stimulant, and pedaling each day for 20-40 minutes, I can say I am feeling better than before going into the hospital and starting to grow muscle again! I know healing is not always linear and I will have falls, but I will prevail! 

Thank you.

(I will be updating on here periodically.)

...

Ehler’s Danlos Syndrome (EDS), Hypermobile type
Connective tissue disorder that affects collagen- most abundant protein in the body.
Daily subluxations (joints move out of socket/placement), chronic joint pain, headaches, muscle atrophy, brain fog (a constant cloud/haze), seizure/tremors.

Gastroparesis
Partially paralyzed stomach- food/liquids do not move down. Constant severe nausea and pain. Vomiting, bloating, chronic dehydration, and delay of medication breakdown. I have lost about 50lbs total. 

Postural Orthostatic Tachycardia Syndrome (POTS)
When I sit or stand up, my Heart Rate jumps high and stays like that Ex: 80bpm sitting to 140bpm standing.
Makes me short of breath very quickly. Stairs, long term standing, and long distances are very difficult.

Orthostatic Hypotension
When I sit or stand up, my Blood Pressure drops and is unstable. Ex: 90/60 sitting 70/35 standing.
I have vision and hearing issues when moving. I use compression garments, salt tablets, my IV fluids, electrolyte supplement, and stability devices- walker, wheelchair. Acupuncture helps with better blood flow.

Mast Cell Activation Syndrome (MCAS)
Allergies, but not really allergies. Mast cells (immune cells in the body) inappropriately release chemicals causing a range of symptoms. I react to most things and am extremely in limited to foods, products, and medicines.

Irritable Bowel Syndrome (IBS)
Bowels are very fickle, and I have very little control over them. Lots of food sensitivities on top of various diets. I go back and forth between diarrhea and constipation. I have constant abdominal pain and spasms.

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First year:
EDS Conference (hotel, travel, conference)$1300
Concierge fee for primary physician $1700
Silver ring splints $2000
IV medicines $9000
Other medicines $2000
Previous bills/hospital stays/surgery$3500
Nutritional supplements/drinks $1000
Acupuncture $2000
Out of pocket deductible $6000
MMJ $6000
Other fees $4000  

Second year: 
Concierge fee $1700
Nutritional supplements/drinks $1000
IV medicines $9000
Out of pocket deductible $6000
Other medicines $2000
Acupuncture $2000
Service Dog $4000
MMJ $6000
Other fees $4000
  • Connor McCarthy  
    • $50 
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  • Shastin Joynt 
    • $15 
    • 30 mos
  • Shastin Joynt 
    • $15 
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  • Anonymous 
    • $500 
    • 33 mos
  • Anonymous 
    • $200 
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See all

Organizer

Kayla Mendes 
Organizer
Fort Lauderdale, FL
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