Unknown Condition

[Leeds1968]

It’s been 24 years since I found out that I have McCune Albright Syndrome/Fibrous dysplasia. This is a very rare condition affecting my bones and endocrine system (Hormones). I have fibrous dysplasia in my head, face, jaw and it’s taken away most of my front teeth. I have a disfigurement although I don’t particularly like that word!! I have struggled over the years to fit in socially as I’m usually judged because I look different, this has affected my mental health and my anxiety to get on with my life. My condition has made me who I am today in a lot of ways. I have a strong personality and a dark sense of humour and I always seem to light up the room with my daft humour, this is a mechanism I’ve used to overcome my anxiety and it’s a great tool to have. I’ve got many friends who love me without prejudice and are fiercely protective of me. Because I look different people will and do waggle the finger and take the mickey or call me ugly..if I hear or see people do that then I will usually call them out, I will speak with them and try to educate them, failing that I’ll intimidate them!! which makes me smile 😊 people forget I have feelings also and I want to be happy and loved. My medical condition has always been a problem as the medical profession don’t understand what it is and at times have never heard of it. Getting any professional help has been a struggle and the easiest way to treat me is by giving me painkillers and showing me the door.. I don’t think so!! I’m now getting the right help at Stanmore hospital and Queens square hospital..waiting on an appointment. They’ve found lesions in my head affecting nerves to my brain..I’m not anxious about that, I’ve got this far in life. Feel free to contact me anytime and I will try answering questions that you may have. Keep smiling 🙂

All the very best,

Seán

[Hidden]

Hi Leeds1968

Great to hear from you.

I like you attitude!! I think people must deal with things in their own way, That's only right as people need the space and freedom to call things as they see them, but your way of seeing things has not a little in common with my own!

Sounds like you are taking a sensible grounded approach. If its working for you, that's excellent!

I've always been a huge fan of space. When John Glenn flew into orbit in 1961, he said of his spacecraft, "Just imagine! 1 million parts ... all made by the lowest bidder".

What was being said in truth was even if all the parts worked with 99.999% success, there'd still be bits that didn't work as advertised. His spacecraft was just so darned complicated ....

The human body is not so different. It is the most complicated machine I can think of!

Yet everyone behaves as though doctors have all the answers, when sometimes, they are scratching their heads as much as a the rest of us.

I was reminded of this when you titled your post "unknown condition" by then named it. But giving it a label of course does not give you the answers.

Glad to hear you are getting help. Let us know how it goes.

And if you need us all, here we are.

Kindest regards,

[Matrix1959]

Sending good thoughts your way, Sean. You really have got a good attitude. I think I can learn from you.

I am currently dealing with a fairly new health issue where so far I haven't been able to get a proper diagnosis. Going to my third doctor in a few days. This is in a period of less than a year. I have been feeling very frustrated as this also relates to brain & eyes working together.

Since I am in the States, it seems very hard to go through hoops to get to the proper type of doctor even with supposedly good health insurance. I am not even able to see someone specialized enough yet that should be able to understand what's going on.

Keep us posted when you know more.

[EvaChangingFaces Partner]

Hi Leeds1968 and thank you for your post and for sharing your experiences here. It sounds like you've had a really challenging time with your condition over the years and suffered with anxiety and your mental health and the fact that the support that you needed wasn't available or accessible must have made it even harder for you.

However, it's also clear that you have developed a lot of resilience and skills through this journey and thankfully you have met people who have been able to be there for you as well. I wonder if you have any strategies that you use to cope with these feelings and if you feel able to share them here as I think people could benefit from your experience. Hopefully, as the community grows, you'll find people to connect with and continue to share your thoughts here.

Take care,

Eva - ChangingFaces

[AlwaysSmiling Community Ambassador]

Hi Leeds1968 , thank you for sharing your story. Although it sounds like things have been quite difficult for you at times, I love the positive outlook you've still got. Sorry to hear you've been struggling with anxiety. It can be difficult to socialise when you're aware you look different can't it. I've experienced similar instances where people stare or make comments about the way I look, but like you I try to educate others and stand up for myself. I agree that humour can be a great coping mechanism and I also try to use my sense of humour to get through difficult times. I'm glad you have supportive people in your life and that you're now getting the right help that you need. I wish you all the best for the future.