I have been diagnosed with Behcet's disease and am sadly losing my battle. I am a mother of 4 young children, and wife. I will die soon if I don't receive lifesaving treatments in Arizona. I have a gofundme account at gofundme.com/helpcassfight if anyone is so kind to help. Thank you and God bless you all who deal with this horrific disease.
Cassondra Alonzo
I have Behcets also. I've had it since I was 22 and I'm now 52. I've been in the Behcets study at NIH in Maryland and my Behcets Doctor is Dr. Yusuf Yazici in NYC. What type of medicine will you be getting at Mayo? I also was a patient at Mayo in MN but that was for my bone cancer. It is an amazing hospital.
Good luck,
Kerri
I am so sorry to read your terrible story, but can I ask you why do you think that you're dying? What is it that you have that is life threatening? I also have Behcet, and Sjogren, and RA and another rare congenital disease. I'm 46. I was supposed to die from cancer a long time ago but I don't feel in any danger now. Who told you that you were dying?
I have a type of Behcet's called Neuro Behcet's. I have severe vascular involvement, and neurological dysfunction. Since being on chemotherapy and not being able to get the proper treatment that I need, I have declined over the past 3 years. My heart, kidneys, and the constant infections have taken over. I have moderate kidney damage, and am bedridden, due to the nerve issues. The doctors have since told me now it is to the point that I due side whether to give up and go on end of life care, or I need to get to Arizona where I can get the medications I need and see the specialists that can treat me. My body is shutting down, and I am in a race for time. Hope that answers all your questions.
OMG, I am so so sorry... honestly, I am still trying to understand that disease. I have only been diagnosed a few months ago but I have suffered from it without being aware for at least 15 years. I am also a severe case, and I'm dealing with a total of 8 incurable diseases, including 4 rares. Can't work, spent all my money on exams and surgeries, I refused chemotherapy but I cannot even afford a treatment at this point. Kidneys, liver, heart...there is only one area in my body that is not damaged and I'm extremely grateful for it: my brain. I live by myself which can be easier but also I do not get any tenderness or care, I have to fight on my own. Last August I had to go to the ER and a friend of mine who is a healer in Canada told me I had 5 weeks to live. I was totally dying... but then... I'm still here. One day, I decided that I wanted to live and had too much to do to just die like this. And I started to make a shift with my mind. Today, my kidneys, liver, nerves, heart, glandular system are completely reset and functioning just fine. I still have a few issues, especially with RA and I need a hip surgery, but I can only tell you that from the day I decided that I didn't want to die like this, I started to see miracles. And it was not my first time. 23 years ago, I was paralyzed and disfigured after falling in a stone avalanche for 1300 feet. I was in a coma and had a near death experience... it took 6 years to recover but I did it, once I decided to not listen to the doctors who said I will never walk again. I don't know if this will help you, I hope so... just know you are not alone and miracles do happen. Big hug to you.
Hi Cass, not heard how you are doing since you set off for Arizona? Hope your doing ok. Would love to hear how the treatment is working x
