1. Life with ALD and Addison's
By Rhys Long

2. 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

3. 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.

4. 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

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

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

7. 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

8. 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

9. 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!)

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

11. 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

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

13. Reference http://www.aldlife.org/