"Research Marfans Syndrome+other connective..."

November this year i had an appointment with i think the proper name is Teaching Officer. I have seen them twice,i am always nervous about seeing anyone new at the hospital but they are really helpful and have tons of empathy,it makes life so much easier especially when your struggling with continual pain and tiredness.It is incredibly important to me that research continues into these disorders.When i was younger i agreed to quite a lot of research at various hospitals and endless student doctors at king college hospital all were respectful.Today i had a hip xray and a through check up from my Teaching Officer and i filled in several pages of research which i should have done months ago but they did`nt say anything about that thank goodness. They examined me throughly and checked my back as my neck is dropping to one side freezing my neck on one side and impairing my breathing.Also i keep getting a bad twisting pain in the bone of my thigh as i walk,this is to do with the disorders i have and that i cannot absorb vitamin d so my levels are critical,but the hip is staying in place it has not dislocated because of the skill of the surgeons and putting a stent in,what they did was amazing,Okay i have to use a wheelchair quite a lot but i have the absolute joy of walking outside and talking to my neighbours and really short walks which i am very grateful for and the days i cannot do it i know i can look forward!