My 4 and half month old twin daughters have this very rare genetic condition. They have yet to be tested to find out what type they have and the severity of it. My partner has lived with this condition all his life and he is now at a stage in life realsiing that he has never been normal and all he has ever felt in his life is pain. He is only 24 and the disability of the condition has taken its toll with him he is having major problems with his joints and dealing with contractures. It is affecting him mentally and he is not coping very well.
I am now trying to come to terms with the fact of raising 2 daughters with a disability and looking after my partner who will never work again. Its all so scary was hoping to hear some words of wisdom from anyone that has had this condition in the family.
We know very little about it as there is not much research done as cant get the funding as it is so rare 1 in 17,000 known to have this condition.
My daughter has been in so much severe pain all of her life, in the last few days things have come together and we are realising her pain must be to do with this condition, they wont do nothing for her pain until we see a specialist on thursday it killing me inside, I just want them to take her pain away isnt that what they suppose to do.
Seems we are just left to get on with it till we see specialist dont know were to turn for advice, help i am so confused i just cant thing straight.
Any advice would be very much apprfeciated.