Life with ALD and Addison's By Rhys Long

Who am I & early life My names Rhys, youngest of 3 brothers I'm 19 years old Business management student at Lincoln university Award winning beekeeper 2017 13 year long musician

Diagnosis How i was diagnosed Diagnosed with ALD at 13 months Started Addison symptoms at 14 months Low fat diet and Lorenszo Oil from age 18 months to BMT (required play specialist assistance to take oil) Bone-marrow transplant at age 6 Normal brain scans, however changes to the eyes and optic nerve In-patient for 5 weeks What is Adrenoleukodystrophy? This is an X-linked hereditary condition which affects boys at the early years of their life. It's caused by a hormonal imbalance meaning the body can’t break down the long chain fatty acids, which go on to attack the myelin around the brain in various ways, subject to the individual.

My medical background ALD - diagnosed 2000, received BMT without changes to the brain (affecting eyes) 2005 Secondary Addison's disease- diagnosed 2000 Subaortic stenosis - from birth Genu-valgum - diagnosed 2013

Managing medication Ensure to have a well structured medication time Take the correct dosages Understand how you're feeling Know your limits

Education Secondary school Exam stress Port of call(s) Storing/handling medication Sports

Uni life Surviving freshers - tell your friends and know your limits! Available services - GP, well being, student service, course leader DLA Keep contact with local specialists Self management

Operations What I've had? Bone-marrow transplant (2005) 3 combined leg operations (2014, 2015, 2017) Internal loop recorder (2016) More coming up in the future How to cope? listen in the pre-op mention if you don't feel 100% increase dose post-op

Transitioning into adults what to expect? Doctors talk to you...not your parents! Doctors expect you to know the facts Intense appointments Big words (question them!)

How to manage the transition Read your post-appointment reports Organise your notes/reports Understand your illness(es) Build a rapport with your specialist

Social life Tell your friends Educate them on the emergency injection Know your limitations Keep healthy and fit wear a medic alert bracelet Understand the genetics

Tips and suggestions Read your notes/reports Organise your notes Carry an updated medical kit Ask the questions Understand your medication

Reference http://www.aldlife.org/ https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/adrenoleukodystrophy https://www.nhs.uk/conditions/addisons-disease/treatment/#living-with-addisons-disease https://www.medicalert.org.uk/ https://www.myelin.org/lorenzos-oil/