Gravitational Pull

I have had this condition since 2015. The first three years were pretty hard, in time I have learned to deal with it. I have integrated it into my identity. Inspired by this experience, I have authored and published (in Italy) a graphic novel called The Fact Finder. Without being a story solely about MdDS, its main character is much impacted by this condition.

There are some good things this condition brought me. I have increased stress and pain resistance (I developed a strong shell). And I can draw people in movement better 🙂

I have made this painting as a way to visualise, capture, and why not, pay tribute to this invisible condition that is affecting my life but also making me appreciate it more.

I dedicate this to all of you, warriors. ~Alex Bodea

Gravitational pull (MdDS) by Alex Bodea | Egg Tempera on Paper | 5×5.5 inches | 2022

Please amplify our voice and join us in raising awareness, especially as Rare Disease Day approaches.

Alex, a Romanian born, Berlin-based artist, shared Gravitational Pull with us just in time for Rare Disease Day, which is February 28 this year. We will be sharing Gravitational Pull in our next newsletter and social media outlets. Add your voice to ours and share this story and our RDD posts on Facebook, Twitter and Instagram.  If you’re on Twitter, be sure to join NORD and Sayed Tabatabai, MD, for #RDDChat22, Feb. 28 from 6:30–7 pm ET. Don’t miss out on Dr. Tabatabai and other physicians answering #raredisease related questions!

We also encourage you to tell your story through art and submit to Rare Artist, a program to exhibit the unique gifts of individuals with, or affiliated with, a rare disease. The Rare Artist Gallery, displaying the artwork and videos of 2021 Rare Artist Awardees, is currently on view as part of Virtual Rare Disease Week on Capitol Hill. Contest submission for 2022 awards opens in June, MdDS Awareness month! Visit Rare Artist for details.

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4 comments

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  1. María Fernanda Valencia Franco

    Hola, soy colombiana pero vivo en españa desde hace 16 años. Tenía 28 años cuando experimenté mi primer episodio de sensación de dar botes o de flotar, venía de un viaje de Venecia. El segundo episodio fue al regresar de un viaje en autocaravana, por desgracia me quede dormida en la parte de atrás y fue lo peor, la tercera mala experiencia fue al regresar de colombia, fue un vuelo con muchas turbulencias y dos días después, empecé con los mismo. Todos estos desagradables momentos me han durado casi dos meses, visitando médicos, especialistas de todo tipo, resonancias, análisis de sangre, oídos, ojos, en fin de todo y todo salía perfecto, aunque mis síntomas no mejoraban, me mandaban un sinfín de medicamentos que al final me retiraban al no encontrar mejoría, solo pasadas esas semanas, empecé a sentirme mejor, de hecho pensé que había sido el último fármaco antiepileptico(topiramato) que me había curado.
    El caso es q llegue desde hace dos semanas de Disneyland paris y estando allá, note a la hora de ducharme q algo no iba bien. Y fue cuando llegue a casa de nuevo que supe que mi enfermedad había regresado. Como ya sabia a lo q me iba a enfrentar de inmediato consulte al médico y me empecé a tomar el medicamento q supuestamente me había curado. Pero tan fue mi sorpresa q no solo no me curó si no q empecé a notar efectos secundarios, y desde ahí, he vuelto a tomar un sinfín de tratamientos medicinales que no me han servido para nada, me han hablado de migraña Vestibular, neuritis Vestibular, VPPB y nada de cura. Al día de hoy estoy muy frustrada porque definitivamente me han quitado los medicamentos excepto uno que contiene diazepan que es lo q me relaja y puedo descansar, hasta tumbada noto q me muevo, de pie, al andar pero peor al ducharme y bajar escaleras. Actualmente estoy de baja laboral y a la espera de una cita con el otorrino con especialidad en neurología, a ver q me dice. Esta vez la gran diferencia fue encontrar esta fundación, estoy decidida a hablarle a cuánto médico visite a cerca de esta enfermedad y esta fundación, a la investigación de este mal y de lo poco comprendida q me he sentido siempre q me pasa esto. Al punto de pensar en no viajar más por temor a q se repita. Realmente llevo todo un día leyéndolos e investigando y no saben lo aliviada q me siento al no estar sola en esto. Así me he podido explicar mejor a mis allegados.
    Mil gracias y ya iré contando.

  2. Anita Williams

    I guess this may have begun for me while in high school. We had just watched a video in the auditorium. In walking back to my class I began to feel “funny” and everything was hazy. Prior to this I was healthy in all regards. My mother took me to a neurologist and he found nothing wrong. I was only fifteen at the time; I am now 71, and for months experiencing vertigo, almost everyday. I’ve been to my GP, ENT, and have yet to see a neurologist. This is a long story. I’ve never heard of MdDS. I am in hopes of finding a reason for my off and on “whatever this is”.
    Thank You,
    Anita

    1. MdDS Foundation

      Anita, we empathize with your story. Seeing multiple doctors yet remaining undiagnosed for years is familiar to so many of us. If you see a neurologist or other healthcare provider for an MdDS diagnosis, it is usually best to not use the words “dizzy” or “vertigo.” Instead, describing how you feel, such as “rocking as if on a boat,” or “like walking on a mattress,” may help you get a diagnosis quicker. Some doctors are receptive to “rocking vertigo,” which differentiates the motion sensation from the typical spinning vertigo. With MdDS, patients do not experience a spinning sensation unless they have a comorbid condition, for example Benign paroxysmal positional vertigo (BPPV) or Meniere’s disease.

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