Greetings Friends and Supporters,

I'm Cari, a 39 year old rare disease warrior. My disease is due to a mutation in my DNA, which means there is no cure.

In January of 2019 my life changed and has never been the same. I was diagnosed with an ultra rare genetic disease called Atypical Hemolytic Uremic Syndrome, or aHUS. If you do a quick search you'll see terms like "high mortality rate," "high risk of relapse," "kidney failure," "heart failure," and so on... This has been my life since diagnosis and let's be honest, it's not only been extremely difficult to manage, but also flat out scary knowing the diagnosis also came with the equivalent of an expiration date.

-2019 before going into the hospital and finding out I had end stage kidney failure-

My treatment consists of chemotherapy every other week for life. As you can imagine, this is really difficult to manage, even if you had help and support, which I don't. I'm single, live alone, and I don't have support beyond what I provide for myself. My lovely neighbors will help when they can to help drive me to appointments that require sedation or anesthesia, and for that I'm extremely grateful!

-Dialysis treatments in 2019; thankfully my kidneys are still recovering-

But beyond that, I have to work to pay for everything on my own while also enduring immense fatigue, nausea, vomiting, daily migraines, chronic pain, and a laundry list of other ailments as a result of my disease and the chemo. I work hard, to support myself. But I miss a ton of work due to endless Doctor appointments and well, being sick where I just physically can't do it. This is compounded by the stresses of my job, and also lack of money to even purchase healthy foods.

-Artsy picture of my Chemotherapy-

Plus, its a 6-hour round trip for me to see any of my physicians, which is really difficult on me physically, and I've missed numerous appointments recently as I simply couldn't afford to go. When you have an ultra rare disease, you have to see rare specialists, and so I cannot receive the care I need closer.

The frustrating part for me is I worked so hard for years to make sure I would always be in a good place financially, and never in a situation like this. I went to school to be a dentist, and was in my 4th year in fact! But my disease and the treatment cause me to have an extremely compromised immune system. Thus, it simply wasn't safe for me to continue and risk my life working in people's mouths. So I had to let all my years of hard work towards getting my DDS and my dream of owning a dental spa go.

-White Coat Ceremony in Dental School-

Problem is, I'm not on disability, not because I am not eligible, but rather I can't afford to not work as I would for sure lose everything. As such, I still have all my student loans from undergrad and dental school. But I don't make even a fraction of a dentist! So between my medical expenses, student loan debt, and basic living expenses, I simply cannot get ahead, and keep falling further and further behind. I work hard, but there's only so much I can do because as much as I want to, my body simply doesn't physically allow me to do more.

I try my best to remain positive and optimistic despite the hand I've been dealt. But the reality is, I just cannot do it on my own. I'm trying the best I can, working hard, at times far more than physically should be doing, but I'm on the verge of losing my house, my job, and being homeless because I'm just me; I cannot make ends meet no matter how hard I try due to my disease, missed work, and my immense medical expenses and expenses as the result of my disease.

My wonderful social worker suggested I make a page here. I was very resistant, but she reminded me I am no less deserving than anyone else to ask for help. So I'm here today, hopeful, whereas previously I was in a really bad and dark place as the gravity of my situation has had me me utterly hopeless.

I thank you in advance for reading and thoughtfully considering helping. It means so much more than I could ever express through words. Even a long hug with tears of gratitude couldn't express it.

So thank you from the bottom of my heart, as every tiny bit helps. You just being here and reading this is already giving me hope, which is more than I could ever ask for! That alone is a true life saver.

Rare disease advocacy is something I wish I could spend my time working hard for, but my at this point I have to focus on advocating for myself so I don't end up homeless. Hopefully sharing my experiences will help raise awareness as so many struggle with rare diseases, many incurable and many more without treatment options. I know my situation could always be worse. I'm grateful it's not. But I also know I'm teetering on the brink of collapse and that I need to be vulnerable and share my story, and finally ask for help.

Thank you, and I wish everyone well! Please tell your loved ones you care for them, and make the best of every new rising sun, as tomorrow is never a guarantee. Hugs!