2. Síndrome de Ehlers Danlos
3. Interviews

Fernanda Martinez's interview

---

How did all start?

-At the age of 7 I already had simptoms, at 15 they got worse. -Com 7 anos eu já apresentava sintomas, aos 15 eles pioraram.

Do you already have a diagnosis? How long did it take you to get it?

-Yes, it took 4-5 years. -Sim, levaram cerca de 4-5 anos.

For what medical specialties have you been treated? What has been the most useful specialty for your?

-Medical genetics, Orthopedics, Gastroenterology, Neurology, Endocrinology, Angiology, Otolaryngology, Speech therapy, Cardiology, Rheumatology and Surgeons. All is important to me. -Genética médica, Ortopedia, Gastroenterologia, Neurologia, Endocrinologia, Angiologia, Otorrinolaringologia, Fonoaudiologia, Cardiologia, Reumatologia e cirurgiões. Todos são importantes pra mim.

What has been the most useful thing for you so far?

-Oxygen therapy and splints. -Terapia com oxigênio e órteses.

What have been your biggest difficulties?

-Anything, mainly eating. -Qualquer coisa, principalmente comer.

How has your social and family environment reacted? Have your social or family relationships changed?

-Relationships have changed, some have moved away, others still care, some do not understand. -Os relacionamentos mudaram, alguns se afastaram, alguns ainda se importam, outros não entendem.

What things have you stopped doing?

- Soo many - Muitas

What do you think about the future?

-The future is uncertain, everything can improve but everything can get worse, I am prepared for both. -O futuro é incerto, tudo pode melhorar mas tudo pode piorar. Eu estou preparada para ambos.

So far, which years have been the best years in your life? What have you done during them?

-When I was 13-15 years old. I was very active -Quando eu tinha de 13-15 anos. Eu era muito ativa.

What would you like to do if you didn’t have your condition?

-Play sports / dance and eat everything. -Praticar esportes/dançar e comer de tudo.

If you had to describe your life in a sentence, what would it be?

-Everything changes all the time -Tudo muda o tempo todo.

Finally, what advice would you give to a person in a similar situation?

-Allow yourself to fall for a moment, but stand up and never stop looking for a better quality of life. -Permita-se cair por um momento, mas se levante e nunca pare de procurar uma melhor qualidade de vida.

---