Hi I am Athina Alexandridou and I have vhl ( Von Hippel Lindau diesease), I have establise our vhlfa alliance Greece organization, here in Greece, on 2014, according to Greek laws, as affiliate to vhl alliance in order to help people having vhl ( undiagnosed until then and without doing their dna test in a puplic institution) and kidney cancer as it was and it is our most cancerous situation for vhl patients, that appears again and again during a patient’s lifetime. I will tell you my story. As a child I remember a rumor in our family that my uncle’s health was very fragile because he had removed his kidney, having a lot of tumors in it in the age of 19. Since his health condition was very difficult, I hardly see him around us.
As I was getting older I hardly remember my grand mother, I was the her first grand chlid, having balance issues and finnaly died because of kidney cancer metastasis. After a little while I remember my mom, having exactly the same pace and the same balancing problems. I thought, I have to persuade doctors to hear about our story, it seems something coming again and again in my family as a familial situation. After my mom gets into a coma situation, I try harder to persuade the doctors to hear our story, then a good doctor, half australian-having a procedure of taking family history, listen to me and that was it. He said, the God must of love you very much, I do my diploma on vhl syndrome, you and your family might have vhl. We took an upper abdomen, ultrasound , me and my daughter, and we found a lot of cysts, in kidneys and pancreas, then the doctor was surer that we have to search our dna gonidioma for vhl misfuntion gene. Here is the point where our difficulties began, in Greece were very expensive to have such examinations for our family and we didn’t have these days, a public institution to have our exams. Additionally my mom’s health get worse and worse having hematouria, blood in her urine and feeling very bad, then she had an mri and found kidney cancer and metastasis in many other organs. It was the time that I undertake , with God’s grace the situation, I said to myself, if my mom and my grandmom knew that they had vhl, they would have prevented the results. I have to built a support group in the begging to help patients with kidney cancer early that they have to look for other symptoms and try to see if they have vhl.
I contacted the wonderful lady, called Joyce Graff, found in the internet, for help, and dr. Othon Illiopoulos, who helped me checking my translations of the handbook and etc, With their help, I knew that I have to find a institution that will have our dna tests, in the cheaper price and with the safer way, and we found Democtritus institution, who it mostly involving in genetic cancerous situation. Joyce had come to Greece and had visit the institute and explain exactly the ways that our dna test procedure has to be done together with all known information until then about our vhl condition. Our vhl test began, our doctors team became a fact after visitin our public hospitals in Greece sharing ou vhl brochures, translated from english.and make them a connection with dr. Illiopoulos and vhl allaince. A lot of families joined us as a support group and we decided after 2 years, to become an organization, until then, I have attend, vhl fa allilance meetings and ikcc symposium with all the great people who know they are already in ikcc still, as Illene, rachel, Joyce, Julia,Annie etc etc. We have now in Greece for about 37 families coming to us with vhl and 90% of them with kidney cancer, there were situations that we couldn’t do much, almost all were undiagnosed in Greece and had diagnosis only after having surgeries mostly out of Greece, Now we have a great team of doctors, almost all the surgeries and the targeted therapies mostly for kidney cancer, are known here in Greece, we need to educate mostly urologist in vhl tumors and therapies and persuade them to address to our oncologists when the situation have metastasis, but we thrive. I am also diabetic, I had a celleberum surgery and tumors that I monitor, My daughter have several tumors removed from eyes, spine etc etc. We are still here, We want to live , even stigma and luck of knowleged in many situations don’t help us. Even our country is poor, but have potentials and excellent doctors, We want to help people with kidney cancer and especially the heritary type as ours, because early detection can save lives and for the RCC are so many target therapies, that no one is alone and died undiagnosed as my family! Please help us on that! We need doctors education , especially urologists, oncologists, which is the malignant part of our vhl disease. We have to feel that we are not alone in this battle. My love to everyone, with a big hug from Greece, Athina Alexandridou Chairwoman, of vhlfa allliance Greece.