February 1, 2023
I am an architect by profession, and now I define myself as a Wellness Activist by passion. I was an architect of my own life, designing how to live with Rheumatoid Arthritis for 28 years. I don’t like to be called a “rheumatoid arthritis patient” because to me the disease never defined me; and I believe that therein lies the secret to understanding how to be able to live joyfully despite all the obstacles we may have.
A little more than 1 year ago I took my first step, as a result of a note in the most popular portal of the country where I told that I “transformed pain into humor” through a stand up routine where I told my daily routine “taking weight” to Arthritis.
With the RRSS, I understood that my message could be useful to many people, and there I created: @vozdeartritis; a community where I upload my own content daily and encourage and invite people to live within the Virtuous Circle method.
There are more than 200 rheumatic diseases that affect young people despite the fact that society believes it is a disease of the elderly. It affects young people in their age of pure professional development deteriorating their quality of life.
The complex issue of the latest technology biological medication is that if there are no sequelae you do NOT get a disability certificate. In my personal case, I have had it since 1994, but even so, the prepaid medicine, which is the one that has to get it for me, has left me without medication for more than 1 month.
More than 400,000 people in Argentina are diagnosed with arthritis. Many of them do NOT have access to the disability certificate and therefore less to the biological medication that costs around 2 thousand DOLLARS per month.
Patients are hostages of two actors: the State on the one hand that does not even include arthritis in the PMO, and on the other hand the health system including the private one that is NOT willing to release that money for each patient even though we religiously pay the fee month after month despite the increases.
Without the biological medication that has only been on the market for 10 years, it is almost impossible to have an acceptable quality of life. I lost 6 joints because this medication did NOT exist. Currently the medication I give myself is from Roche. I tried to approach them to support you in some actions I thought, but I had no response for the moment only a video call where I introduced myself and told my project.
Arthritis is not made visible because it is not a “marketer”. It does NOT lead to death, but the deterioration of women (because the percentage of women is higher than men) is HIGH. It must be understood that it is a disease of young people that does not distinguish any kind of social and/or economic class.
With good medication it is possible to have a normal life. Who has arthritis? Tiger Woods and Keith Richards. And there they are shining. There is a lot to do. I want to make visible and create consensus between patients and laboratories and reduce the distance. The community I have started to form is full of fear and misinformation. We know that unfortunately the doctor does not pay more attention to them than 15 minutes. That is why every day from my humble place I support more than 1700 women and infect them with the desire to EXPRESS my life.
In front of the world we do not even register that October 12 is World Rheumatoid Arthritis Day. But I was able to achieve a lot: two years ago I managed with GCBA the illumination of emblematic buildings and monuments of the City of Buenos Aires with the representative colors: green and white.
And also this year, when October 12 coincided with the 25th date of the Argentine Football League, I managed to set up a banner with the slogan of the campaign: Rheumatoid Arthritis: let’s make the invisible visible.
In this talk I invite you to know my story of resilience and overcoming; it all started with arthritis, but it is applicable to any adversity. We are BODY + MIND + SPIRIT, and “we are our thoughts”.
I want to teach you that it is possible to transform every CRISIS into OPPORTUNITY.
Press | Media
Canal 22 Santiago Cúneo: https://youtu.be/sFREnH6HOFY
Radio Bahía Blanca: https://youtu.be/Oamy2tbp16g
Pasión de Agenhoy Radio Florencio Varela | Programa El Círculo: Lara de Alvear
Escucha #ElCirculo – Mariana Cambiasso, la Arquitecta que se volvió Activista por Pasión de Agenhoy Radio en #SoundCloud: https://on.soundcloud.com/b75rh
Liga Argentina de Fútbol: https://instagram.com/stories/ligaprofesionalafa/2947447773269011959?igshid=YmMyMTA2M2Y=
Ciudad de Buenos Aires: https://www.buenosaires.gob.ar/noticias/la-ciudad-ilumina-monumentos-durante-el-mes-de-octubre
Diario Deportivo Olé: https://www.ole.com.ar/river-plate/river-conferencia-prensa-gallardo_0_U378zM7ZJ8.html