Hi, my name is klee89!

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klee89

Hello I'm 35 years of age and got diagnosed with Carney syndrome at age of 12 years old. Didn't know could possibly claim DLA as a child. Only come to learn it doesnt need to be a physically impairment. Upon trying to claim pip now at 35 I was givin 0 points for a disease that uses phrases, sudden death, lifelong condition, cardiac myoxma, heart disease, life expectancy of 50..... Lead to stroke, heart attack, death at any moment if tumor on heart is undetected. Carney complex syndrome I have a rare rare disease, should I keep fighting my pip claim guys.

poppy123456

PIP isn't awarded based on any diagnosis so telling them what it can cause isn't going to score you any points. Whether there's any entitlement will depend on how your conditions affect you.

You can challenge the decision by requesting the Mandatory Reconsideration. You should put the in writing stating where and why you think you should have scored those points.

When you filled out the form if you didn't include a couple of real world examples of exactly what happened the last time you attempted each descriptor that applies to you. Adding detailed information such as where you were, what exactly happened, did anyone see it and what the consequences were.

I'd advise you to have a read of this link before requesting the MR and it will help to have some understanding of the descriptors and what they mean.

https://www.gov.uk/government/publications/personal-independence-payment-assessment-guide-for-assessment-providers/pip-assessment-guide-part-2-the-assessment-criteria#daily-living-activities