Thursday, May 17, 2018

31 Neurofibromatosis Facts about ME!

Hey everyone! So some of you might be new to this blog, or maybe you've been faithful followers since the beginning... regardless of how long you've been reading I wanted to share some NF facts about myself! At the beginning of the month, I posted 31 general NF awareness facts, but now I wanted to post 31 facts about how my life has been impacted by NF!

I also just wanted to announce that after this post is published, I am going to be taking an extended hiatus from this blog. No fear, I will be back one day but for now I need to give this blog a rest and focus on some of the other aspects of my life. It has been SUCH a joy writing and spreading awareness, I am thankful for all of the opportunities this blog has given me.

So without further ado, here are the 31 NF facts about ME!

1. I was diagnosed with Neurofibromatosis Type 1 at the age of 3.




2. My diagnosis was a complete fluke. I broke out in shingles when my brother was born, and I was diagnosed with shingles on the spot but she also noticed some of the manifestations of Neurofibromatosis... and that's how I got my diagnosis!

3. I am the first person in my family to be diagnosed with NF, despite that fact that it is genetic.

4. I have a 50% chance of passing NF along to my future children.

5. I was diagnosed with an inoperable hypothalamic glioma (a type of brain tumour) at the age of 13.

6. I named my brain tumour Herman.

7. Herman has not grown at all in the past 11 years! Yay!

8. Although Herman is very small (like the size of a pea), he has caused me to have a hormonal condition called hypopituitarism. This condition is prevalent in less than 1 in 40,000 people.

9. The hypopituitarism caused me to be severely growth hormone deficient. I took daily injection of growth hormones 6 days a week for over  year (side note, the hormone were for overall hormone balance, not growth).

10. I have had well over 15 MRI's in my lifetime. I actually find them kind of soothing...



11. I have had a headache everyday for the past 12 years and nobody knows why.

12. To treat my headaches I have tried everything from pharmaceuticals (which had side effects that made me forget my name) to alternative Chinese medicine (which had side effects that caused violent mood swings).

13. I have scoliosis but have never needed a brace.

14. I have seen over 36 specialists in my lifetime (specialties ranging from neurosurgery to urology to pain management).

15. The furthest away I have ever sought medical care was the Mayo Clinic in Rochester Minnesota. I was there for 10 days and saw 7 different specialists.



16. I have a skeletal rib deformity (ribbon rib deformity) that has impacted the entire left side of my chest. The cardiothoracic surgeon I saw in regards to this said he has never seen a case of it, and will probably never see it again in his lifetime!

17. I have had 3 surgeries to remove tumours off my body (the last one being 10 days ago).

18. No joke, I have a HUGE head. We measured our head circumferences in my grade 12 biology class, and mine was bigger than everyone elses (boys included).

19. I never met anyone else with Neurofibromatosis until I was 17 years old.

20. Nobody except family knew about my NF diagnosis until the end of my Grade 11 year in high school.

21. In 2016 I helped start a not-for-profit organization to help support people living in Alberta with Neurofibromatosis. We are called The Alberta Tumour Foundation.

22. I have spoken on 6 different occasions about my journey with NF (I still get really nervous every single time).

23. I had the incredible opportunity to go back to my old high school and talk about my mental health journey.

24. It's because of my NF diagnosis (and a very special nurse) that I pursued a degree in nursing, and currently work as a Registered Nurse.

25. When I was 6 I wanted to be a neurosurgeon in space.

26. Lucky for me, the only meds I have to be on are antidepressants and an estrogen supplement.

27. I have suffered from anorexia and depression in the past, and my lowest weight was 84 lbs.



28. When I was a pediatric patient, my Mom used to bribe me with food and shopping to get me to appointments in Edmonton (side note: it always worked).

29. I am lucky to call Reggie Bibbs (a MAJOR NF advocate) a very dear friend.


30. In 2013, I was a recipient of the Reggie Bibbs NF Hero Award.

31. I am extremely directionally challenged... you absolutely cannot use words like "north" and "south" with me... I will likely have no clue what you're talking about. Spatial awareness is something that people who have NF will often struggle with.

Well, there you go! There's 31 NF Awareness Facts about yours truly! If you have any more questions, feel free to post them in the comments below.

- Court

1 comment:

  1. Every post you write is informative and interesting. Enjoy your break and wave at me when you go by or toot the horn like your mother.

    ReplyDelete