Look Nº 778 - Would you like to try?

Sabem aquela brincadeira de criança, fazer de estátua? Acho que é o que tenho feito a vida toda! Adiante, num dos meus passeios encontrei esta estátua/escultura perdida num jardim da Figueira da Foz. Sem qualquer identificação do seu autor (Laranjeira Santos) nem nome! Olhando para ela, com maior atenção, salta à vista o tamanho exagerado dos seus pés e mãos! Acho que esta escultura personifica na perfeição a minha doença, a Paramiloidose, pois afecta esta zona do corpo com maior impacto e, daí, ser conhecida por Doença dos Pézinhos. Para além de que na cidade da Figueira da Foz existe um número significativo de famílias atingidas por esta doença rara. Agora que já vos revelei o segredo desta escultura, vou contar-vos sobre a evolução desta doença em mim.

You know that child's play, playing the statue? I think that's what I've been doing all my life! Anyway, in one of my walks I found this statue/sculpture lost in a garden in Figueira da Foz. Without any identification of its author (Laranjeira Santos) nor a name! Looking at it, with more attention, the exaggerated size of its feet and hands stands out! I think this sculpture perfectly personifies my disease, Paramyloidosis, as it affects this part of the body with greater impact, hence, it is known as Littlefoot Disease. Besides, in the city of Figueira da Foz there are a significant number of families affected by this rare disease. Now that I have revealed the secret of this sculpture, I will tell you about the evolution of this disease in me. 


Há uns meses atrás a minha médica disse-me que iria mudar de tratamento pois o que estava a fazer, até então, já não estava a resultar tão eficazmente. Lembro-vos que o tratamento passava pela toma diária de um comprimido. Simples. Não fosse esse comprimido pago a peso, não de ouro, mas de diamantes!!!

 A few months ago my doctor told me that I was going to change my treatment because what I was doing until then was no longer working as effectively. I remind you that the treatment was to take a pill every day. Simple. Were it not for the fact that this pill was paid by weight, not of gold, but of diamonds!

Recentemente sugiu um novo tratamento baseado na tecnologia de RNA (como a vacina do Covid) que veio dar um novo alento e esperança aos cerca de 1800 doentes existentes em Portugal. Trata-se de um medicamento baseado na ciência premiada pelo Prémio Nobel da Medicina! Tudo boas notícias, mas, nestas coisas tem sempre um mas, este tratamento inovador não passa por uma simples toma de um comprimido. Agora de 3 em 3 semanas tenho de me deslocar ao hospital, ao Porto, e passar toda a manhã a levar o medicamento na veia pela técnica de perfusão!
Recently a new treatment based on RNA technology (like Covid's vaccine) has been suggested, which has given new hope to the 1800 patients in Portugal. It is a medicine based on Nobel Prize-winning science! All good news, but, in these things there is always a but, this innovative treatment is not a simple pill to take. Now every 3 weeks I have to go to the hospital in Oporto and spend the whole morning taking the medicine into the vein by infusion technique!

Não sei quanto tempo vou fazer este tratamento, as deslocações ao Porto são exaustivas, mas há a esperança de o poder fazer no hospital da minha região. Atenção que as boas notícias não se ficam por aqui, o próximo tratamento será a toma de uma injecção de 3 em 3 meses no Centro de Saúde da nossa área de residência!! Yeah!!
I don't know how long I will have this treatment, the travels to Oporto are exhausting, but there is the hope of being able to do it in the hospital of my region. The good news doesn't stop there, the next treatment will be an injection every 3 months in the Health Center of my residence area! Yeah!


Como sabem, porque eu já contei isso aqui, coincidências é comigo. Posso vos dizer que muitas delas são incríveis! Pois, acreditem, nesta história toda houve uma grande coincidência! O ano tem 365 dias, podia ter calhado num qualquer dia do ano, mas não, sabem qual foi o dia em que iniciei este tratamento? O dia em que morreu o meu pai há 27 anos atrás!! Dá que pensar, para mim dá! Um aniversário de morte e um tratamento feito numa Maternidade, local onde se nasce!! Espero que todos nós, doentes de Paramiloidose, possamos nascer para a vida com este novo tratamento. E, como diz a Madonna na música que vos deixo:

"This is not a coincidence
Would you like to try?"

As you know, because I have already told you about it here, coincidences are my thing. I can tell you that many of them are incredible! Well, believe me, in this whole story there was a great coincidence, the year has 365 days, it could have happened on any day of the year, but no, do you know what day I started this treatment? The day my father died 27 years ago! It makes you think, for me it does! A death anniversary and a treatment done in a Maternity Hospital, the place where we are born!!! I hope all of us Paramyloidosis patients can be born to life with this new treatment. And, as Madonna says in the song I leave you with:

"This is not a coincidence
Would you like to try?" 



"Let´s forget your life!!"








11 comentários

  1. Tudo a seu tempo, mas adorei esse modelo de vestido, que padrão mais bonito
    Novo post
    Tem Post Novos Diariamente

  2. Es un bonito vestido, te queda genial Te mando un beso y ten una buena semana.

  3. Oh wow I am you are back! I could not get to your site for months. I am sorry you are struggling with this illness. I am glad the meds help and I am glad it is only going to be every 3 months then every 3 weeks. And love this dress and what a great place to shoot this.

    Allie of

  4. That's very promising that this could be a good treatment for you Marisa.
    Sending you love and hugs,

  5. I admire your strength and resolve in your battles to overcome Littlefoot disease / Paramyloidosis. The very expensive pills, the intravenous infusions and the injections sound like quite a long ordeal (and there are some vicious looking whips in that Madonna video) but I like that you have hope and are battling onward!
    These photographs of you by the statue in Figueira da Foz are wonderful!
    I love the the design of and floral print on the dress you were wearing in the photos above!
    You look fabulous in them.
    P.S.: THANK YOU very much for your thoughtful and wonderful comment on my blog post titled
    "Recap 2: More Full Brief Panty-Modelling Photos LABELED FREE FOR RE-USE" :D <3 xx

    1. Hello Panty,
      The Madonna video is about domination, I wanted to make an analogy with what the disease does to us, it dominates us!

  6. Que bom que está de volta! Fiquei muito feliz por isso!

    Boa semana!

    O JOVEM JORNALISTA está no ar com muitos posts e novidades! Não deixe de conferir!

    Jovem Jornalista

    Até mais, Emerson Garcia

  7. Bello reportaje fotográfico y bellas fotografías tomadas en un lugar hermoso en la forma más adecuada.

    Que disfrutes de un buen verano.

  8. I also don't believe in coincidences. My best friend's grandmother died on my best friend's birthday. Not only hers but of her mother as well. So, daughter and mother born on the same day and the grandmother died on the very same day. Connected in life and death.

    My paternal grandmother died on my 18th birthday. Another special connection!

    I also receive treatments for my illness via IV. I used to get it through an injection but they had to change my therapy.

    I am at peace with the fact that I'll have to visit hospitals until the day I die. Life is a struggle, what can we do?

    This is a lovely styling you're wearing and I like the symbolism of the statue.

    Have a lovely day!

    1. Hello Ivana,
      I had a very complicated time recently, my schedule was just appointments and exams, walking from hospital to hospital, luckily I got rid of two medical specialties. But I still have many because my illness has affected several organs of my body. But, as for coincidences you are also like me, I believe that they are not just coincidences I believe that in another dimension we will understand everything that happens to us on Earth.


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