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Article published on: 30 January 2015, 20:41
This is a hard article to write and easy to miss important things.
I would like to publicly thank Mozilla for their amazing support through the years. Working with the Firefox developer tools team has been an honour, a pleasure and one of the best experiences in my life. I could write something lengthy and emotional, however I prefer to say that Mozilla is more than a company, more than a Web browser company. What makes Mozilla amazing is the people who work and support their mission for a better Web, for open access to technology, while valuing privacy - we put people first.
Mozilla is truly open to people of all genders, races, and physical abilities. I have never been mistreated, never felt inadequate because my physical abilities did not match the average person.
I should write more about my experience with Mozilla, but even finishing this article takes time. Maybe I'll do it if I can.
I would also like to thank the St Thomas hospital dermatology team, from London, UK. Under the lead of doctor Jemima Mellerio, I had the best hospital treatment that I ever benefited from. I would like everyone to know that this team here has a lot of experience with EB, and patients around the world should have no doubts.
I came to London with a complex situation, after having doctors who could not perform general anesthesia on me, who did not know how to do any esophageal dilatations for me, to improve my swallowing. Here the team has been able to perform these procedures and everyone was kind and understanding, trying to help as much as they could.
I encourage anyone struggling to find a team who can help them with eating, with any health problems related to EB, to contact the St Thomas hospital. Do not waste time in Romania or other places that don't get you a quick answer to your concerns. Esophageal dilatations can be done even in very severe cases and they help a lot.
One of the complications I'm having is with the skin cancer metastasis, which at this point is reaching it's fatal turnout. Even if the team here tried its best, medicine still has a long way to go before patients can be saved from the most serious life threatening situations.
Nonetheless, big thanks and appreciation to the St Thomas hospital. I would like to mention some of the doctors who made a difference, in no particular order : doctor Jemima Mellerio (dermatology consultant), doctor Gabriela Petrof (dermatologist), doctor Susan Robertson (dermatologist from Sydney), doctor Aaron Boyce (dermatologist, and a great Australian as well), doctor Michael Duncan who made all the procedures possible (anesthesiologist, poet and a rugby player and fan), doctor Andrew McGrath who also made the difficult procedures involving my esophagus possible (consultant radiologist), doctor Lynne Hubbard (consultant nutritionist for EB). Big thanks also go to the EB clinical specialist nurses, who have been with me every step of the way, who provided comfort and skills in the operation theatre. I will not forget their kindness in hard times.
Obvious thanks to the surgeons, oncologists and radiotherapists who have been involved and consulted with the EB team on my case.
I haven't been an easy patient, both in terms of health and my personality and character. Doctors and nurses here know well I've been actively involved in asking, turning every idea upside down. I asked a lot of questions and I wanted to know everything. Yet, they have always been understanding and prompt with responses to help me make sure I understand everything that was going on. Patience and kindness matters a lot in such situations.
Thanks must also go to the hospital staff, for example the kitchen managers who went out of their usual jobs to help meet special needs. Thanks to Pash Mane and his wonderful colleagues.
Thanks to the Hillyers ward in the St Thomas hospital for their own kindness and help. Met some very nice nurses here, really good people. :-)
Special thanks to doctors Kate Moss and Danuta Orlowska for their psychological support. Having someone to talk to meant a lot.
I must apologize for missing names of people who had equal or even higher level of involvement here with me. It's difficult to write this article and not miss someone important.
The point of this blog post is to highlight and recognize the work of the team which usually happens in the anonymity of their respective jobs. They are dedicated and do more than their jobs.
Keep up with the great work, everyone. :-)
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