Jaide is 1 of 4 people in 1 million, that will be diagnosed with TTP this year.

Hearing the word RARE will forever remind Jaide of the terrifying day she woke up in the ICU. On January 27th, 2021, Jaide was diagnosed with TTP an extremely rare blood disorder that can be life-threatening and requires emergency medical attention.

◼ A diagnosis of TTP is challenging, and a patient needs to be closely monitored as a crucial step for survival.
◼ Although major advances have been made in the management of TTP, there is no cure, and due to its rarity, exact causes are still unknown.
◼ TTP is life long and relapses can be expected to occur in up to 60% of the patients.
◼ Jaide will need continual follow up to try and get her back to a good quality of life.
◼The cost of treatment and the time off of work has created a financial burden that Jaide cannot get through without support.

What is TTP?

TTP (Thrombotic Thrombocytopenic Purpura) is a blood disorder that causes platelets to clot, as well as low red blood cell counts. In a person without TTP, a gene called ADAMTS13 produces enzymes to prevent platelet clotting, resulting in regular platelet counts. There are two variations of TTP, inherited TTP and acquired TTP. With inherited TTP, the ADAMTS13 gene is faulty, and in turn does not create the enzyme to prevent the clotting. With acquired TTP, the body begins creating autoantibodies that prevent the ADAMTS13 enzyme from working to prevent the clotting. Jaide was diagnosed with acquired TTP. Either variation results in extremely low platelet counts, and can also cause red blood cells to break apart quicker than the body can replace them, causing low red blood cell counts. The small clots created without the platelet regulation from the ADAMTS13 enzymes cause general symptoms such as terrible migraines, bruising, and neurological issues as well as major organ damage and death if untreated. Treatment can help to overcome an episode, but effectiveness of treatment varies for every patient, and it is costly and time consuming.

Treatment

There are a few procedures Jaide is going through or has gone through to treat her serious episode. Treatment aims to address two things, the deficiencies in a patient’s blood, then prevention of a relapse.

To address Jaide’s critical condition, procedures were done daily in hospital to get her stable. Jaide’s platelets and red blood cells dipped to critical-condition levels prior to each of her hospital stays. To fix these urgent deficiencies, she was admitted to the hospital for seven days during her first stay, then nine days during her second stay for treatment. To increase her red blood cell count, they did blood infusions within the first few days of each stay. To fix her extremely low platelet count, they did a procedure called plasmapheresis two hours daily. Plasmapheresis treats TTP by removing a patient’s blood a bit at a time, separating the clotted platelets and the autoantibodies affecting the ADAMTS13 enzymes from the patient’s blood, then replacing the blood back into the patient with the addition of healthy donor platelets. They performed this through a trialysis catheter that was placed in an artery in Jaide’s neck. Because Jaide has thin veins, the procedure to insert the catheter was lengthy and traumatic. During plasmapheresis sessions Jaide is given calcium, Benadryl, pain medication, and anxiety medication to alleviate symptoms of the procedure. This is done alongside daily administrations of a high dose of steroids to suppress her body from creating more of the bad autoantibodies that affect the ADAMTS13 enzyme. The doctors were able to get her blood under control with these treatments each hospital visit, but because of the quick relapse following her first stay she still has the catheter in her neck while home for the time being.

The second part of treatment is attempting to prevent a relapse once the blood is under control. Because TTP is rare, there is little known about causes of an episode, and in turn determining the chance of a relapse and the extent of future treatment is difficult. For now, Jaide is getting blood drawn every day as she finishes her first week following her latest hospital stay to monitor her counts. The frequency of getting blood drawn could decrease or continue in the future depending on how she does in the coming months. She also goes to the hospital once a week for five weeks to receive a medication called Rituximab for sessions that range from two to five hours, depending how she responds to different rates of administration. This drug will decrease her chances of relapsing in the future; but there is still a 30-50% chance of relapse even after being treated. (There is another drug that decreases the chances of a relapse even more significantly but is $270,000 and not covered under her healthcare, even with her doctor’s recommendation.) She will also remain on a high dose of steroids to be taken daily for months, with a plan to slowly decrease daily dose over time. This is to continue to suppress the immune system and prevent the body from creating the harmful autoantibodies.

Financial Burden

Because of the lengthy treatment requirements, there is a significant medical cost that has fallen on Jaide. Like many of us, insurance does not cover much of the medical costs. At the moment of writing this, Jaide has accumulated $223,873.28 of medical debt. Once treatment for her current episode is completed, if everything goes well, she will be looking at about $310,000 of medical debt. However, given the extensive time that she has been unable to work, her more urgent concern is paying her bills and general living expenses such as food, rent, and transportation.

Donation Usage

Jaide needs our help; she is struggling with a very rare and life-threatening illness, and donations to her fund will go to prevent financial hardships that will inevitably follow her treatment without aid. Jaide is regularly a giving person and doesn’t seek help often, but considering the circumstances she might not be able to get by without it.

The first use of donations will be towards bills and necessary living expenses. Generally, Jaide and her boyfriend both work and contribute to these expenses, but, like many others, live relatively tight on their combined income. They have been down to one income for roughly a month and have been able to stay afloat through financial help from close family members, but that solution is temporary and won’t last long.

The secondary use of donations will be towards Jaide’s newly gained and massive medical bills. While Jaide and those in her support system don’t expect to be able to pay off hundreds of thousands in medical debt, any surplus donations that go beyond her immediate financial support will be put towards that debt.

◼ J A I D E N E E D S O U R H E L P ◼

I'm Jaide's mom, Tammy. I think it goes unsaid how terribly sad and worried I am, especially with Jaide living in Louisiana and me living in New York. In the beginning, she had emotional support from her boyfriend as well as her sister Chance who flew down for the beginning of her hospital stay; and her dad, stepmom, and little sister Kylie who drove down for the last few days of her first hospital stay and the days following her discharge. I was able to visit Jaide for the week right after her first hospital stay, and we got to spend a few really good days together, considering what she was going through. Then, the day before I was to fly home to New York, Jaide relapsed, putting her in ICU again and requiring another hospital stay. Jaide's boyfriend, Brandan, has been taking excellent care of her, making it easier on this mom knowing she is in good hands! But I am still fearful that her financial situation is more than her family can help her through on our own.

◼ Any amount and Every share is tremendously appreciated ◼
We thank you in advance and will be sure to post updates!

Jaide and her boyfriend during her second hospital stay, she always tries her best to stay in good spirit and look for the bright side.

Jaide’s experience so far with TTP, in her own words:

My name is Jaide Alexyn, I am twenty-two years old and grew up in Corfu, New York. I currently live with my significant other, Brandan and two beautiful cats in New Orleans, Louisiana. I recently graduated with my bachelor’s degree in Interdisciplinary Social Sciences with a concentration of community mental health. I was diagnosed with TTP- Thrombotic Thrombocytopenic Purpura on January 27th, 2021. From my understanding based on what the doctors told me, TTP is a rare, life-threatening blood disorder that causes small clots to form in vessels throughout the body which can limit or block the flow of blood to vital organs such as the brain, kidneys, and heart. The increased clotting that occurs in TTP uses up platelets in the blood, which are significant to help form healthy blood clots. With the little research there is on TTP, they do know there are two types, acquired and genetic. I was diagnosed with acquired TTP, meaning I wasn’t born with this disorder, I developed it. In acquired TTP, my body makes autoantibodies (proteins) that block the activity of the ADAMTS13 enzyme. The importance of the ADAMTS13 enzyme is to cut von Willebrand factor (a blood protein- involved in the process to prevent or stop bleeding) into smaller pieces to regulate its interaction with platelets. But, with TTP it’s a different story.

I began to feel sick on my birthday, January 10th, 2021. I woke up to a bunch of random bruises on my arms and legs. They were big, but I was working at Target doing drive-ups so figured it was from there. Later in the day, I decided to go shopping and as I walked through Marshalls I felt super fatigued and got a horrible migraine. This was troubling because I never really got headaches let alone a migraine. I cashed out, went home and immediately passed out for about five hours. For two weeks, I was completely drained and exhausted. I began sleeping during any free time I had, and even had to uncharacteristically call into work. I thought it was just because of my heavy period I was experiencing, or the stress from work, but I made a doctor’s appointment to be sure nothing serious was wrong. This was mostly to alleviate my mom’s stress and squash my own worries. But ultimately, I continued with my daily routine.

On January 25th, I was watching a movie with my boyfriend, Brandan, on the couch. Like the several days before, I wasn’t feeling good. I felt tired and my most intense migraine yet (the tylenol and ibuprofen was not working at this point anymore), so I started freaking out. I completely lost vision in my right eye, literally unable to see anything out of it. Brandan comforted me and I put myself to bed, assuming I was having an anxiety attack. I have a history of anxiety, so I used that to justify my symptoms. The next morning, I was able to see but it was spotty, and I noticed these purple little dots all over me. I finally started googling all these symptoms, and a lot of vitamin deficiencies were popping up. I was experiencing symptoms every day at this point but kept on going because I did not want to unnecessarily go to the ER, because I didn’t think it was that serious.

Finally, January 27th rolls around, the day of my doctor’s appointment with my new physician. At 1pm, Brandan dropped me off and I checked in. I told my doctor I have had my period since January 13th, and it's very heavy, I have horrible migraines to the point of vision loss, and I am constantly fatigued. She ordered blood work, and an MRI scan for me to do that day. I went down to the third floor, got my blood work done and headed to the other building for my MRI. A few hours later, around 5pm, she called saying there was something in the MRI scan that could be a cyst or polyp. She said I needed to see an ENT specialist, and that it would be a few more hours for my blood work to come up. At about 7:30pm, I was driving, and I got the call about my blood work. I pulled my car over in a vacant parking lot and was thrown a bunch of numbers and terms. I was told I was in “critical” condition, but I was not really understanding what he was saying or trying to get across. He said if I feel worse within 12 hours go to the ER, otherwise they will have me come in the morning. At that point, I called my mom, then my dad, crying. I don’t know what's going on, all I can think is “critical condition”. Luckily, my aunt is a registered nurse and called me. She had me send over my lab results so she could see the numbers and explain it to me. She told me I needed to be going to the ER tonight. She told me to go home pack a bag and admit myself.

So, I headed home and started packing a bag. As I was grabbing random items (yes, I grabbed my car title and my diploma to go to the ER- I think this is when I was losing it), I went to grab some water from the fridge because I felt my right side of the face go numb and thought I could be dehydrated. I reached for the bottle and it completely fell, I couldn't grasp the bottle and for some reason it seemed a bit confusing. It was then that the urgency set in; I knew, I needed to get my things and go. Yep, I was planning on driving. So, I grabbed the bag full of random, unnecessary items with my left hand and opened the door. I collapsed, my bag spilled, and I couldn’t move or yell for help. I was trying to speak but it wasn’t making any sense. “I am having a stroke?” I immediate thought. I was so confused but continued trying to find my phone to dial 9-1-1. It was extremely difficult because at this point there was no feeling anywhere, and I couldn’t think straight. With a lot of struggle and fear, I finally got ahold of 9-1-1. The operator was having difficulty understanding me, but she finally got my address, which I was attempting to clearly express but for god’s sake, I couldn’t. EMTS finally arrived. I live in the back with a gated fence, and I heard them yell “Did someone call for help?”, I then attempt to yell, and they finally hear me and enter. They weren’t friendly to me by any means. I was lying on the floor, trying to explain what's going on, but I literally couldn’t. It was physically and mentally impossible at the time. They carry me to the ambulance, strap me down, and try to ask me what seemed like millions of questions. I didn’t know how to answer some, and the ones I could answer were getting lost in translation because my neurological symptoms had prevented me from speaking coherently. I knew I was confused, so I was trying to show them my blood work results to explain that I’m in critical condition. They were dismissive of my symptoms and chalked everything up to anxiety. At one point I tried to say I was going to drive myself because we weren’t moving, and I did not feel ok! They finally decided to drive me to Ochsner hospital after being strapped down and being told I’m just having a panic attack but, they’ll still take me to the ER.

I got to the hospital and this is when it became a blur. They got a hold of Brandan, who was just leaving work at the time, and said where I was and that I was unable to speak, I was speaking gibberish at that. They asked if I had a history of anxiety, in which he told the doctors yes, I have a history of panic attacks. But he explained to them that I have never lost my speech during an anxiety attack, that it’s typically just hyperventilating. He then explained about how I just got a call about critical blood work. At this point I began to lose all sense of reality. I don’t remember much from that night after that, only flashbacks of certain situations. They ran some tests and were shocked by the results. They ran another test, while also putting me through an MRI to check for potential problems in my brain. They found my red blood cell count at half of normal, 2.09 red blood cells (normal 4.00-5.40), and very low platelets, I was at 6,000 (normal 150,000-350,000). They then explained to Brandan that it looks like a rare blood disease, TTP. They called for an emergency surgery to put a catheter in my neck for the first time. I don’t remember much other than freaking out because of a plastic bag over the head (the sterile sheet) for the catheter, seeing blood everywhere, and screaming.

I woke up two days later in ICU at 3am confused as all hell. I didn’t know why I was in the hospital or what this three-pronged thing hanging out of my neck was. I got up, saw an enormous bruise on my leg, I was in some serious pain. I called Brandan and asked him to bring my toothbrush and snacks (that was apparently my first thought). He told me my sister Chance was coming to see me today. “What the hell is going on?” I thought to myself. Apparently, he had spent the majority of the first two days at the hospital, and my sister had flown down to see me, and was coming that day. When I was first told about the disorder, it took me a few days to really understand the reality of it all. Physically I felt pain, emotionally I was drained. I was in denial for a few days, and it wasn’t until I relapsed five days after being discharged from the hospital the first time that I realized this is serious. I must deal with this for the rest of my life. I again received a catheter and therapeutic plasma exchange each day in the hospital, and after my numbers were again reached, I was discharged after another nine days. I spent a week getting plasma exchange the first time. I started my Rituximab at the Benson Cancer Center on February 18th, it’s one day a week, for five weeks. Receiving this treatment lowers me to a 30-50% chance of having a relapse. During my treatment, I get my blood work done every day to make sure my numbers are stable, and this will hopefully be less frequent in the future. This is just the beginning of my TTP and I am hoping to get back to my life soon. I miss it!

THANK YOU FOR TAKING YOUR TIME TODAY TO READ MY STORY!

◼ Any amount and every share is tremendously appreciated ◼
We thank you in advance and will be sure to post updates!

Unique to Rare, Jaide's Journey with TTP

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