Podcasts about proteus syndrome

It's The Odder's Birthday! The Odder just turned a year old and as part of the celebration, we are releasing a special bonus episode! Today we talk about some of the most interesting and unheard of medical diagnosis and what it's like to live with Pica, Prosopagnosia, and Proteus Syndrome. We will also still be publishing our usual episode on Thursday so get ready for a two for one deal this week!Want to request your own personalized episode? Email me at theodderpod@gmail.com!Follow us on facebook here: https://www.facebook.com/theodderpodInstagram: https://www.instagram.com/theodderpodcastTwitter: https://twitter.com/theodderpodTikTok: https://www.tiktok.com/@theodderpodcastPlease rate and review!Music Credit:"Magic Escape Room" Kevin MacLeod (incompetech.com)Licensed under Creative Commons: By Attribution 4.0 Licensehttp://creativecommons.org/licenses/by/4.0/Main Theme:"Dream Catcher" Kevin MacLeod (incompetech.com)Licensed under Creative Commons: By Attribution 4.0 Licensehttp://creativecommons.org/licenses/by/4.0/

A rare disorder characterized by a patchy overgrowth of various tissues of the body. Also known as The Elephant Man Syndrome.

THIS IS A VERY SPECIAL EPISODE with Jordan Whitewood-Neal, my good friend from university! Jordan was a multi-award-winning student and after having worked for Stirling Prize winners DRMM, he went on to be a visiting lecturer at the University of Brighton. His dissertation, 'The Cascade Experiment: The Growth, Conservation and Cultivation of An Autoethnographic Woodland' was nominated for the RIBA Presidents Medal. He is also the Architects' Journal Student Prize 2020 Nominee and the RIBA Sussex Student Prize 2020 Nominee. We spoke about how he deals with Proteus Syndrome, one of the world's rarest disabilities; the parallels between our minority groups and resilience; and how to excel at architecture university! This episode is unique because of my and Jordan's close relationship and memories. We talked about much of our life in university together and how we felt part of a culture of intense competition. But was it all bad? I argue that we got immense value from this competition.  You can tune in to the Two Worlds Design podcast on all major streaming platforms such as Spotify, Apple Podcasts, Google Podcasts and more here: https://twoworldsdesign.co.uk  

Thanks for tuning in! Here are the sources from this episode of MedBits: https://rarediseases.info.nih.gov/diseases/7475/proteus-syndrome https://rarediseases.org/rare-diseases/proteus-syndrome/ https://www.healthline.com/health/proteus-syndrome

On this week’s Tech Nation, Moira speaks with Cary McClelland about the significant impact of technology on San Francisco – which may be coming to your city, if it hasn’t already. Cary’s book is “Silicon City: San Francisco in the Long Shadow of the Valley”. Then on Tech Nation Health, a potential new treatment for Proteus Syndrome, best known to you from the movie, The Elephant Man. It may also deliver benefits for endometrial cancer. Dr. Brian Schwartz is the Chief Medical Officer of Arqule.

On this week’s Tech Nation, Moira speaks with Cary McClelland about the significant impact of technology on San Francisco – which may be coming to your city, if it hasn’t already. Cary’s book is “Silicon City: San Francisco in the Long Shadow of the Valley”. Then on Tech Nation Health, a potential new treatment for Proteus Syndrome, best known to you from the movie, The Elephant Man. It may also deliver benefits for endometrial cancer. Dr. Brian Schwartz is the Chief Medical Officer of Arqule.

On Tech Nation Health, a potential new treatment for Proteus Syndrome, best known to you from the movie, The Elephant Man. It also has potential for treating endometrial cancer. Moira speaks with Dr. Brian Schwartz, the Chief Medical Officer of Arqule.

  I was born on the 20th of February in 1975 and at my birth there was something visibly wrong with me. My legs were large and my feet very large and deformed (for want of a better word to use).It wasn't until a few weeks later that i was actually allowed home with my parents as the doctors did not know if i would live or die, but hey I'm still here at 39 having fun! On reaching school age I attended a special school being there we all had physical problems so we knew that we had limitations, but we accepted that.   On reaching 14 I was enrolled part-time in a comprehensive school to do my GCSE's came away with 4 GCSE's. After school i started college to do an Art course and more GCSE's. I made good friends and along with studying enjoyed some weekends away with plenty of booze and drunken nights.   After leaving college i went to study a degree in Graphic Design away from home. However I had mobility difficulties and didn't find it easy so deferred my course and came home to have an operation to reduce the weight of my legs. Soon after i wanted my independence and found my own home and lived it up by spending weekends drinking and dancing the night away! At the same time i did courses in Sociology, Psychology and Criminology. I then went on to do a degree in Psychology, a long 3 years, but enjoyable and I met some lovely people and one person, Amanda, who is now one of my best friends.     After taking a quiet year of study and doing a course in Sign Language, i followed that with a desire to be a counsellor. 3 long years of the course lay ahead. However, 2 years into it i suffered a Deep Vein Thrombosis (DVT) and was paralysed for 6 weeks. Once the feeling returned I had to learn to walk again, which i did and got back on the counselling course and caught up with the work. During my counselling course i did lots of voluntary work in various fields, and found that it gave me a lot of confidence.    Living on my own and looking for some type of work i've spent lots of time on the internet and have met some lovely people. One person, who is now a best friend, is Sue she has been there for me when ive needed someone, especially after my long stay in hospital.     Then again, after another short course in mediation, i was admitted to hospital this time for 5 months. Developing blood infections, kidney and stomach problems, urine infections, severe anemia, and MRSA and foot drop. Again i had to learn to walk, it took a while but i'm at least now back to myself, walking is a little harder but it won't stop me! & 2005 what a change:      The beginning of the year (2006) i was still getting back on my feet, walking was slowly getting easier. At the same time i was in touch with Tracey Whitewood-Neal, founder of the Proteus Syndrome Foundation UK (PSF  UK) who put me in touch with the top doctor in the world who knows as much as there is to know about PS. Following a consultation with him in May i was finally told that i possibly do have Proteus Syndrome. It wasn't a definite diagnosis, but its the nearest i have ever to come to knowing.   After the help i received from the PSF i wanted to give something back and do some fundraising, so after a few weeks of organising the £ for PSF Day was born. So after this the media wheel started to turn and the rest as they say is history. See media appearances section for how life changed in 2006/7 and beyond. So after all the media coverage I have had, 2010 brought a year of big change, after living with infection after infection for up to 12 years, my ulcer on my left foot developed blood poisoning. This meant that it had to be amputated or it would have killed me. I was very ill at the time and it took 6 months for me to be discharged from hospital and then I had to start all over again to gain my independence and get my life back on track. It is now 2012 and I am still on the road of recovery, but I have belief in myself that one day I will achieve what I need to have a full and independent life. Here we are in 2014:     So here we are in 2014 & I am still striving for independence and I will get there, I am due to get a new vehicle soon that will mean I can drive from my wheelchair. This will make a huge difference to my life and will mean that I can actually leave my home on my own for the first time in 4 and half years! I still need a new wheelchair that I can get in and out of without hurting myself, but that will hopefully be in the pipeline soon, so watch this space for pics of me whizzing around in my WAV (wheelchair Accessible Vehicle)   So here he is, Walter, my new Wheelchair Accessible vehicle. There have been a few ups and downs since we met, mainly due to problems with the adaptations, but he certainly making my life easier.