A Very RARE Life-Threatening Genetic Disease PLEASE HELP!!!

Hi my name is Rocheal Pittman and I have been intubated 8 times in the last 2 years... I've woken up to my tongue being so big and swollen that it is protruding out of my mouth to the point I can't even physically shut my mouth and rushed to the hospital because my throat and air way is swelling shut...with what they originally thought were severe allergic reactions, but after being pumped with epi steroids and benadryl. It had ZERO effect on my swelling and if anything my swelling gets WORSE faster! After they use any of these drugs typically for allergic reactions.

I have been hospitalized so much because of swelling in the last 2 years that I find myself in the hospital AT LEAST once if not twice a month... EVERY MONTH for at least one week each stay which means generally I am in the hospital half of every month.

The doctors couldn't figure out what is wrong with me and why the typical things they used to treat allergic reactions were not helping me.

So this year they finally decided to send me to not only an allergist but an immunologist who ran a bunch of tests and BINGO!

I am NOT suffering from allergic reactions but I am suffering from a Very Very rare life-threatening genetic disease called HAE (Hereditary Angioedema with normal C1 estrase) and not only do I suffer from HAE I have the rarest form of it Type 3 which technically has no cure or medication to help it currently.

The only Medication they can give me the cheapest form runs OVER 20k a dose and I need it every 2 weeks. Which is over 500k annually but again technically this medication is for type 1 and 2 not my type 3 so there is a huge chance even with this medication once it is finally approved it will still not fully help make my swelling go away or stop my attacks. But at this point my insurance is refusing to pay for it because of its costs and I have been denied a ton of times and all my appeals have also been dismissed I am currently appealing my last denial.

After one of my intubations last year in September I had a migraine and they did an MRI and come to find out I had a brain tumor a meginonma on my motor cortex and had to have brain surgery last November to have it removed needless to say it seems like everything started going wrong as soon as I turned 40.

In early May I was also diagnosed with a submassive pulmonary embolism because of the birth control and transmatic acid they were giving me as a cheaper alternative to the medication I should actually be trying to take and because of that I am currently in active right heart failure now on top of everything else.

So unfortunately because of all my medical issues I am unable to work and help my family get by with even the bare minimum. I have also been denied for disability and ssi multiple times and am in the process of appealing my latest denial.

My husband is the sole provider for our family of 4 but because I am hospitalized and intubated so often he also misses a great deal of work because when I am intubated he is my voice and must make all medical decisions for me and cant leave my side, because I can't make them myself.

He often misses at least one if not two weeks of work a month so we have fallen greatly behind on bills and racked up an outlandish amount of debt all because of my medical issues.

We struggle just to pay our rent each month let alone any other bills such as rent... utilities... water.... sewer... garbage... electricity.... internet.... car insurance... 2 car payments (one doesn't even run)... food.... toiletries.... household supplies etc let alone be able to afford the medication I need.

And each month we just get further and further behind to where we are today on the verge of homelessness and loosing what little we do have left.

so I ask even if it's only a dollar to please donate anything. It will help and it will greatly be appreciated during this hard time for us.

I just wanna be able to get my medication for a few months so that is where a majority of the money would go to get me through the insurance denials and appeal processes. The remainder would go to helping pay our bills and other monthly expenses such as gas for my husband to get back and forth to the hospital, rent, and utilities while im being hospitalized so much which causes him to miss so much work. But most of all I want to be able to feed my kids and not have to worry when and if they will have their next meal especially since I at least get food in the hospital when they are often home hungry.

Thank you so much from the bottom of my heart and thank you for taking the time out of your busy lives to read my story and appreciate anyone that shares... donates... or even comments every bit helps! ❤️

THANKS!