Author: insomniadoodles

Yes, there IS a difference between ONH and SOD.

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I have been confused by this for a very long time. Some credible online resources claim that Optic Nerve Hypoplasia (ONH), and Septo-Optic Dysplasia (SOD) are the same thing. I went on thinking that was true for the longest time, until I dug a little deeper and learned that there is, in fact, a difference.

Dr+Rich+w+2ggg

Dr. Richard Windsor, shown discussing another condition known as Hemianopsia. (image credit)

Today, I went to the Low Vision Expo in Indianapolis to listen to Dr. Richard Windsor and his daughter speak about the advancements in assistive technology for the visually impaired. He is a world-renowned eye specialist who also happens to be my eye doctor. After his speech was over, he invited people to ask questions. I waited for the crowd to clear out, and I asked him if I could do a short interview on camera discussing ONH. He graciously agreed to do that, because he’s a great guy who just genuinely likes to help people. Thanks again for taking the time to speak with me!

I asked him to explain the differences between ONH and SOD. I’m paraphrasing, but he said that ONH is a deformation of the optic nerve in which it does not develop properly, becoming too small, or not attaching well enough to function fully. Some patients lose all of their vision, while others may only have partial vision loss. He goes into more detail in the video. Septo-Optic Dysplasia is another complication that is often seen with ONH, but there are some ONH patients that do not have SOD. They are not the same thing, SOD is a diagnosis that describes further complications related to the optic nerve being under-developed, as well as further dysfunctions within the brain. Read more here.

So… mystery solved! Unfortunately, the National Organization for Rare Disorders (NORD) is incorrectly claiming that ONH and SOD are the same thing, which has contributed to this confusion. I have contacted them and asked them to fix that. NORD is an excellent resource for information related to rare disorders, and they cover so many rare conditions, accidents are bound to happen. I don’t hold this against them, but I do want to correct the issue.

Thank you for reading! Here is the full interview with Dr. Richard Windsor. You can find his information here.

Featured Image credit

#PitFighter

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Shoutout to all my fellow Congenital Panhypopituitarsim warriors!

I’m sorry I haven’t been actively posting in this blog as much as I had originally planned. I’ve been doing quite a lot behind the scenes working on some projects, and there are some pretty great things in the works! I have been in contact with a few well-known organizations trying to lay a firm groundwork for a podcast dedicated to Panhypopituitarism, and hopes are high that this will be a success! While brainstorming, I came up with an idea for a hashtag us Panhypopituitarism patients can use on social media to find one another!

#PitFighters

Get it? Pit…. “pituitary”? Fighter, because we’re fighting for our bodies all day every day? Also, Pit Fighters are a thing that exists?

It’s clever, right?

Right, guys…?

Whatever, I’m using it anyway.

 

If you don’t know what Panhypopituitarism is, please watch this video!

I have more videos discussing Panhypopituitarism as well as Septo-Optic Dysplasia (SOD) / Optic Nerve Hypoplasia (ONH) on my YouTube channel. Here is a playlist containing all of those videos.

Exciting new plans!

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This is still in the early planning stages, but I am working with the CPHP Foundation, a group for Congenital Panhypopituitarism patients like myself, to create a podcast series discussing CPHP and all that it entails. We are hoping to schedule some guest experts to discuss various aspects of our condition, but I can’t promise we’ll be able to find anyone willing to offer their time for free. If that doesn’t work out, we’ll still have our podcast, but it will be purely from a patient’s perspective.

If you are an endocrinologist who is well-educated on Panhypopituitarism and would like to get involved, your help would be invaluable! Please contact me via any of these social media platforms:

Twitter: https://twitter.com/InsomniaDoodles
Facebook: https://www.facebook.com/sunny.ammerman
YouTube: https://www.youtube.com/channel/UCoGFDQGxnP-gQbkstZV7WAw

Once you initiate conversation with me there, I’ll offer more contact information.

I’ll keep you guys updated on how things are going! Thanks so much for all of your support!

Panhypopituitarism SOD/ONH updates

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I know it has been forever since my last detailed health update, so I decided to get you guys all caught up on what has been going on over the last year or so.

Links:
Panhypopituitarism 101: https://youtu.be/MPDvFMk8ZNY
Adrenal Insufficiency info: https://www.niddk.nih.gov/health-information/endocrine-diseases/adrenal-insufficiency-addisons-disease
Adrenal Crisis info: https://medlineplus.gov/ency/article/000357.htm

CORRECTION:
In this video, I said I was showing symptoms of Cushing’s “disease” when I was on an excessive amount of steroids, the correct term is Cushing’s “syndrome”. Here is the info on that rare condition: http://www.mayoclinic.org/diseases-conditions/cushing-syndrome/home/ovc-20197169

#SpoonieSpeak links:
https://twitter.com/hashtag/spooniespeak
http://www.whentaniatalks.com/spooniespeak/

I haven’t been doing much online lately, but here is my website. You can find all of my social media contact links there: https://insomniadoodles.com/

Now hiring full-time employees: No pay, no benefits.

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Now hiring full-time employees;

You will be expected to make regular appointments with clients, and keep up with them often. Additionally, you must follow a strict daily routine if you want to work efficiently. Even then, there is a chance your daily workflow may be interrupted by sudden unexpected changes, so you must be able to adapt quickly and work well under pressure.

While you only have to come to the office every few months, you will be expected to continue your work from home, available at all hours. No weekends off, no holidays, no vacation time. Sick days? You’ll have plenty of those, no worries.

Your schedule can change at any time with no prior notice, so don’t expect to be able to make recreational plans in advance. If you would like to request a day off, well, that’s too bad. We’re sure your friends will understand.

Work starts whenever we choose.

Congratulations, you’re hired! 

Oh, you didn’t apply?
That’s not our problem.

Regards,
– Chronic Illness

Chronic Illness Stories: Tales from High School and a message to teachers

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This is my first blog post here regarding my life with chronic illness. I have a congenital condition called “Panhypopituitarism”. Don’t know what that is? I’m not surprised, it’s very rare. That’s why I made this short video explaining it.

If you went to high school with me, you probably know I was on the Speech team for a while, and I was interested in Theater. If you know the teacher I’m taking about, please don’t drop her name. I’m not sharing this to shame her.

One year, I auditioned to be in the play “The Princess and the Pea”. It was a comedy musical. A lot of my friends were in it, and I was able to get a minor role as a chamber maid character. I had a lot of fun attending practices and getting to know the other students.

Unfortunately, I kept getting sick. I’m not talking about your common cold. I’m prone to respiratory infections that can get pretty serious, and I had to rest often, so I missed practice a lot.

When I did get to come to practice, I really did try hard to get caught up and learn the lines and choreography. It was obvious I was falling behind, and I was embarrassed when I had to be singled out to learn what everyone else had already done. I still tried, though. I wanted to help make the play a success.

The teacher that directed the school play also taught a theater class I was in. One day, she asked to speak with me out in the hallway. In private, she explained to me that I had missed too many practice sessions, so she was removing me from the play. I was heartbroken, but I understood. She was right, I had fallen behind too much. I just nodded and said okay. She then went on to tell me she was disappointed in me. I very clearly remember her words. “I thought you were going to be my strong freshman”.

She looked me dead in the eyes and said “This is a big deal. Why aren’t you crying?”

I was stunned, but I replied simply “I’m not going to cry in front of you.”

We retuned to class and I sat at my desk with my head down in my arms. Ashamed.

I regret never explaining to her the extent of my illness. Hell, at the time I didn’t even know how serious my condition was. I just took my medications every day and never really looked too deep into it until I was much older. She knew I was missing practice due to illness, but I don’t think she understood how serious it was.

Maybe it’s not fair for me to resent her so much because she couldn’t have known how serious it was, but I still look back on that memory with regret, shame, and anger.

Teachers, please think before you speak. If it wasn’t for the way I was talked down to that day, I probably wouldn’t have given up on speech and theater like I did. You are there to enlighten students, not to shame them and beat them down. Before you start talking down to someone, at least try to understand what they are going through.

Thanks for letting me get that off my chest.

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This is a picture of my friends and I from High School, taken in 2010.
I’m the one in the grass-stained jeans. haha