Definitely. I can only imagine how hard it is.

Nice to meet you! Thank you for interacting I enjoy getting to connect with other HPP patients

In terms of the food supplement with the enzyme, which we could consider that as an oral enzyme replacement therapy there are challenges with this. Just about all enzyme replacement therapies are delivered via IV or subcutaneous injection and part of the reason is that if you take an enzyme as say a pill or in a food it often doesn’t survive the acid of the stomach. I think there are a couple of oral enzyme replacement therapies I believe for replacing pancreatic enzymes but those still have their own challenges. Enzymes break down pretty easily so need a lot of extra protection to get the right dose via day a pill. The other issue is that creating enzyme replacement therapies in general are very challenging. Enzymes can easily be what’s called “denatured” which is in a sense broken down by changes in temperature, acidity etc (why the oral enzyme replacement therapies are especially challenging).

Advocacy - Raising Awareness about certain rare disease is a type of advocacy. Advocacy can come in different forms but part of my advocacy is sharing about rare diseases and bringing awareness to them. Metabolic - chemical process or changes in the body. A lot of diseases are considered metabolic diseases. My rare disease Hypophosphatasia is an ultra-rare genetic metabolic bone disease as it affects a certain enzyme. Isomerase - a type of enzyme. Specifically in this condition it’s affected but isomerase is essential for metabolizing plants and animals. Neurological - neurological is just meaning the nervous system like a neurological disease affects the nervous system and brain. Phosphate - is a mineral in the body. Important in bones, teeth and energy production. Enzyme - proteins that help speed up metabolism. Very important. Several diseases affect the bodies ability to make certain enzymes. My genetic disease affects my bodies ability to make an enzyme called alkaline phosphatase. Ribose - is a sugar and carbohydrate naturally produced by the body. Cellular - cellular meaning cells like living cells. We are living cells and there are things that happen at the cellular level so within the cells. Our cells. RNA - ribonucleic acid or RNA this is present in all living cells and is similar to DNA.

Hey! I’m sorry to hear about your recent diagnosis. All kinds of emotions I know. The first few months can be tough as you figure out the best treatment plan and work to get things under control. Hoping that you and your doctor figure things out quickly and get you in remission. Also sorry to hear about your dad as well! My younger sister and mom were diagnosed a couple months after I was too! I guess things start to make sense for some family members when one person gets diagnosed and everyone has similar symptoms. Let me know if you have any questions or if I can support you in any way. I didn’t see your comment until now or I would’ve responded sooner!

@@AaronBlocker No worries at all! I have a stupid music channel where I play depressing music, haha, and I sometimes miss folks' comments for a little while too--and I mean sometimes a few weeks. Thanks so much for your reply! It's been a real roller coaster in so many ways: all the tests, the feelings, the doctor bills, the Predisone side effects haha. I felt like I was having a constant panic attack for like 2 weeks until I started tapering. I don't have many people I know who can relate so it's reassuring to see videos like yours! I don't know anyone else with Crohn's Disease but my Dad, and he's still just figuring things out. I feel bad for him because it went undiagnosed for so long he has strictures now. Thanks for sharing this--it's comforting.

There is a treatment that slows the advancement of the disease down. It’s called nitisinone. But a lot of treatment is aimed at treating the symptoms as well.

@AaronBlocker I am just 18 and I have back pain and sciatica and arm radiating pain from 1 year and I was so depressed 😔

That’s a really good question. Yes, pretty similar comparison. Skyrizi works on IL-23 alone, TREMFYA works on IL-23 and another component that promotes IL-23. Mounjaro works on GlP and GLP-1 receptors, ozempic works just on GLP-1. So a very similar type of situation with TREMFYA and skyrizi. Really good observation!

You are welcome. I’m glad this helped!

Really? Do you mind sharing? Would love to know more if you are willing to share.

@ I messaged you on Instagram

I’m interested

I’m interested

Would love more insight in to why you think so? Genuinely curious

You can’t change your name genetics whether they’re bad or good. It’s a part of who you are regardless.

@@Alaina-g1z emotions are regulated by the multitude of oxytocin and vasopressin receptors contained in your prefrontal cortex. And the good thing is that you can change the genes responsible for said receptors being coded wrongly via targeted crispr technology. . Humanity is a collective of prefrontal cortexes trying to survive beneath the boot of those who aren't properly developed into it; the rest aren't humans because the advent of modern civilization provides survivability to the unwanted genes as well, genes that were ought to be lifted from exostence via natural selection and intra species predation. If you change the laws, meaning if you don't punish murder, but instead punish lies, then murder will cease to exist within a single generation; however if you punish murder, then you advertrdly facilitate a world that liars are not punished.

@ we can now correct some genetic mutations with gene therapy though. Which is a good thing

I’m glad to hear that! And hoping you don’t break anymore bones

Thanks

Sorry to hear that! I can definitely relate. Are you on any treatment?

Thank you so much

Thank you!

Thank you so much

Thank you so much

Thank you!

Thank you! I really appreciate it

It is. There have been preclinical trials in HPP for gene therapy that have shown promise and some ongoing. Also the recent study that reprogrammed B-cells to produce ALP and was one treatment per year.

Sorry to hear about the diagnosis and how bad it is right now but glad you have an answer and can get treatment started to help. If there’s anything I can do to support you please let me know!

Youre not alone! Bs auto immune disease has changed the course of my life… but were honestly lucky cause all the other autoimmune diseases are worse

Thank you! I am trying to make it accessible. I’m glad you liked this.

Gonna put this on the list! I feel like the 1500’s?

Of course! Definitely a passion of mine and hopefully helps others. Thank you for watching and commenting!

Thank you so much! These types of comments really mean a lot to me.

@@AaronBlockerYou’re welcome :) keep going man, you’ve got this 💖💪

Thank you friend!

Hi! I understand the fears, I had some as well when beginning these new meds. So I’ve been on Humira since 2015 and was on the Hadlima as well and have switched back and forth due to insurance stuff. I have not experienced any of those side effects. I also don’t know of anyone who has experienced them and I know a lot of people on Humira, Hadlima and the other Biosimilars. Is this your first biologic to try? For myself and others the benefits of taking the medicine in terms of getting g my disease under control outweighed the small chance I experienced any side effects and I’ve also actually not had any side effects other than some injection site reactions. I’m happy to answer any questions! I know this process is scary.

Thank you for sharing as well. Good luck with your switch I hope it is smooth and an easy transition for you! 🤞

Good luck! It was an easy switch for me. You switching from Humira?

@@AaronBlockerI am and I have no clue how to inject it I just took it out of the fridge. Do I have to leave it out for the same amount of time as humira before injection?

Oh wow. Does it happen when you drink water or just when you have water on you?

Oh gosh yeah I’m glad Benadryl helps! I have a friend who has cold urticaria but didnt think about cold water triggering it. Thank you for sharing!

I am finally out of it and almost off of the crutches thankfully!

Thank you!