My Takayasu's Disease fight

$10,313 of $15,000 goal

Raised by 137 people in 47 months
Devri Velazquez  BROOKLYN, NY
In 2011 at the age of 20 I was diagnosed with a rare vascular disease, Takayasu's Arteritis, in the midst of the busiest and most productive time of my young adulthood. 

My life before Takayasu's was relatively normal and healthy: I was an ambitious, driven, determined, student and budding creative professional with an appetite for success and independence. In addition to finishing up my Public Relations studies, I juggled multiple part-time jobs to sustain myself and ensure that I would hit every 2, 5, and 10-year objective that I had set out for myself.

Then, one day, my life changed within a matter of weeks.

During Spring 2011, I lost the feeling in my wrists at work. I thought it was because I was always on the computer, so I wore wrist braces to ease the numbness and tingling. Then I started losing a bunch of weight and my skin turned yellow. I started thinking I had the flu because I would cough and have cold sweats throughout the day. I lost my voice suddenly, and this lasted about four weeks straight. At night, a super fast heartbeat would wake me up out of my sleep, causing a pain that people often described as a heart attack. I lost my vision for about 10 minutes in the store. A few nights after that event, I got up from bed to use the restroom and fell to the ground because I had completely lost the feeling from my knees down. I started getting a debilitating migraine everyday that didn't go away, and that was the final straw for me.

About eight weeks into the strange and recurring symptoms, I knew I needed to tell my mom.

Once she saw me, we checked into the hospital that same day and immediately went through a series of tests and scans to get to the root of the problem.

Less than a week later I was officially diagnosed with Takayasu's Arteritis, a rare, incurable vascular disease that was violently ripping my life away from my grip as I knew it.

Only 1 out of every 2 to 3 million people have it. Takayasu's has no cure and there is little information about how to treat and monitor it on a longterm basis.
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When I was first diagnosed, I was placed on a high dosage of prednisone to reduce inflammation of my blood vessels and encourage normal blood flow throughout my body and to my heart. I received a monthly IV infusion called Cytoxan, a chemo drug that forced me into a year-long period of bed rest, full-time caretaker included. That year, I took 20 pills a day -- it's on my Instagram  if you don't believe me! During that period of my life, I felt hopeless. Everyday I thought that I was going to die. I was depressed and couldn't see the light; my body felt like a prison where I was serving a sentence for. I didn't understand what I had done to deserve this. Being the overachiever I was, having little access to information and resources in order to have a fair chance at recovery ate away at my hope.

In 2015 I officially got into a "remission" state with my disease when my rheumatologist put me on a different treatment called Actemra, on a montly basis through IV infusion. I no longer had to take all those pills and other meds, and I was able to return to work full time and travel again. Life was amazing.

During December 2017, I spent some time in the hospital due to a mysterious blood clot in my mesenteric artery. For that reason, I have been placed on coumadin/warfarin, a blood thinner that makes me have to watch my diet and lifestyle more closely. I'm back on the steroid, prednsione. My NYC medical team decided to put me on a new monthly IV infusion called Rituxan/Rituximab. I am hopeful that this will manage the levels of inflammation my body has endured since being "out of remission" from the disease.

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Here's the dilemma.

As a full-time freelancer and creative entrepreneur, I have to cover healthcare expenses out of pocket. This detail is overwhelming to say the least. I've been working for myself since March, and months later, I am still catching up on the hefty hospital bills from the December/January, bi-weekly doctor visits, monthly infusion treatments, and prescription meds that I refill every 15 days.

You can imagine the kind of strain all of this gives someone who is pursuing their creative entrepreneurship in a city like New York. 

Although I called this a fight in the beginning of the campaign, I'd like to think of myself as a warrior. This is a battle, indeed, but not one that is in vain or will oppress me. Instead, it is one that empowers me to continue a path that is filled with integrity and passion.

Thank you, as always, for your continued support.
xx
devri
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Update 10
Posted by Devri Velazquez
10 months ago
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I am now a free agent, with no full-time job which means that at the end of this month I will be on the search for insurance to replace the one I currently have which helps me pay for my medications, doctor visits, specialty tests, and new treatment that I am getting. (For years I was getting a monthly infusion of a drug called Actemra, but it seems to have caused me a blood clot that left me hospitalized for 2 weeks over Christmas and New Year's, which is why we're trying another one, Rituxan or Rituximab, out.) Your continued support helps me in so many ways. Being in New York City, paying all of my own bills and now having to think about keeping myself alive and healthy by paying out of pocket for this treatment is stressing me out but I know that by faith, I'll see the light!
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Update 9
Posted by Devri Velazquez
12 months ago
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I've been in the hospital since December 23rd, hoping to get out before New Year's Day. I'm currently recovering from a mysterious blood clot in my stomach and my team of specialists is experimenting with various blood thinner medications to dissolve it and prevent any future ones.
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Update 8
Posted by Devri Velazquez
31 months ago
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thank you for hanging in there with me. still getting my treatments, and I am hopeful that there will be a reform. still getting the letters demanding payment as well, but I'm prayerful. thanks again for all your support!
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Update 7
Posted by Devri Velazquez
32 months ago
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I still get my treatment once a month and now I have insurance that helps it to be about $60 a visit plus $40 copay. While I'm maintaining regular day-to-day expenses of living as a single woman (rent, car note, food, gas, etc.) it can be difficult keeping up but thankfully my doctor's office tries to be flexible as they can with me. I'm scared to go a month without my treatment; it's helped me to remain stable and without any major debilitating crises.
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$10,313 of $15,000 goal

Raised by 137 people in 47 months
Created March 9, 2015
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Annika Victoria
7 months ago

From a fellow Takayasu’s warrior. I hope this helps even a little. You’ve got this, babe!

BN
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8 months ago
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