How were you diagnosed with a rare disease?

it took 6and half years before I found out what was the matter with me,and that was with the London Hospital which was 30-july 20221 my life has been hell I have fallen over over many times,crack bones,I am in a lot of pain all the time,get very tied,friends and family keep away,they don't understand they can be cutting in there remarks I feel very alone,I could on and on but I think it would drive everyone round the bend. Helen

Hello everyone,

getting a diagnosis for a rare disease can sometimes be a long, confusing, or emotional journey.

How were you diagnosed?
Did it happen quickly, or did it take time to find answers?
And what was that experience like for you?

Please feel free to share your experience with the other members. 💛

Take care,

Somya from the Carenity team 🌼

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