Posts by Jose Murphy7

So, following up on my previous updates—even though I’m running a bit behind schedule—the site www.psoriasis.info is officially live. It’s pretty much a blank slate right now, so if you’ve ever expressed interest in helping build out a resource like this, please go ahead and register. I’d also love to hear your thoughts on content ideas, how we should structure things, and general organization. Basically, the more hands we have on deck, the faster we can actually get moving.
Don't worry about the design just yet; it's currently non-existent, but I'm working on a layout as we speak.
Just a heads-up: If you were thinking about using this space to run ads or promote a business, don't bother. That's not what this is for.

I’ve been trying to step away from the daily grind during the holidays, which is why I didn't get this posted sooner:
I hope you all had a blessed and peaceful Christian Easter surrounded by family and loved ones—taking that time for yourself is actually vital for your health.
My wish for everyone is that you find a little pocket of peace and love within yourselves, discovering a personal source of strength and calm to help guide you forward with faith and confidence.
Sending my best wishes and blessings to you all.

Just as Easter represents a promise of faith for Christians, I hope you all can hold onto a belief in a better tomorrow, free from this obnoxious illness (or at least without its most obvious symptoms)...

Thanks for all the input, everyone. For now, we'll just stick to a basic body lotion or maybe some oil. While I'm going through this treatment, I really don't want to mess with anything else that isn't completely neutral.

Quick question: we're currently treating my son with herbal therapy, but per the instructions, we're only applying it below the waist. For anything above the waist, we were told to use brandy if he gets itchy, but that only helps for a few minutes before the itching kicks back in. Does anyone have recommendations for a neutral soothing agent instead?

O.T.
Any logo ideas for psoriasis.info...? Please and thank you...

Psoriatic arthritis is basically just an extension of psoriasis (along with a few other variations), and unfortunately, it’s not all that uncommon... I get where you're coming from—when you're in that kind of pain, you aren't exactly picky about what kind of medicine works.

Robert Clark2 said:...plus, I had to get blood drawn every ten days just to monitor my liver enzymes, lipid levels, glucose, and all that. I wouldn't recommend it to anyone. Luckily, I didn't run into any major side effects.

I heard somewhere that psoriasis might be linked to liver dysfunction. Does anyone have experience with this or any data on it? Do doctors usually run liver panels for this?

Chris Morgan67 said:Shoot me a PM🙂

Restored 🙂

As for how much fish we should actually be eating, I’ve heard plenty of conflicting takes on that too... Either way, there's a massive difference between something fresh off the boat and those frozen fillets that have been sitting in a freezer since who knows when.

Charles Chavez said:The guy probably just wants to help...

I’d prefer to believe that too, honestly. But that's exactly why I want to get these independent sites off the ground—to give us a better way to swap experiences. The domain is already locked down; right now, I'm just sketching out the site map. If you have any ideas for how to organize the content or what should be on there, please throw them my way. Also, if anyone wants to volunteer to help build this out, just hit me up here or send an email.

Anonymous said:I'm Mario, originally from Ann Arbor. I found my way to these ointments and balms through some people I know, and honestly, I'm incredibly grateful for that. Psoriasis... it started hitting me about 3 or 4 years ago. I tried countless creams and went to all sorts of specialists, but nothing seemed to make a dent. It was just one failed attempt after another...

Mario, you've posted this exact same thing a few times now in this thread. I want to believe you mean well, but anyone actually looking for a solution has probably already scrolled through everything and found the info by now. Doing it this way starts to feel a bit like an ad.

Chris Morgan67 said:There’s an American psoriasis association...
As for dermatologists, they usually have deals signed with cream manufacturers... the real question is why Medicare doesn't cover calcipotriol yet here in the States...

I’m fully aware of all those issues. The pharmaceutical lobbies and Medicare's rigid stance are especially frustrating—honestly, I wish they’d hire at least one person dealing with these "neglected" conditions to help make decisions. That’s exactly why I want to start something independent, free from ads, and based on actual, verified info.
I mentioned the association because there needs to be legitimate pressure on the Department of Health and Human Services and agencies like Medicare, but I’d love to know what the current association actually does. It’s almost ridiculous that they don't even have a website in an era where everyone looks for answers online.
I’m going to try to track down and reach out to some psoriasis specialists this week. Any leads would be appreciated.

P.S.
For example, we’re currently testing some herbal remedies we picked up in Canada a few days ago. We couldn't find anything about the treatment or the herbalist online, but we got a personal recommendation. Since conventional medicine has been a total bust for us, we didn't really have a choice. I’m a bit skeptical myself, but we'll see how it goes, and I’ll post the results later (though the herbalist himself is pretty anti-advertising). I don't want to get ahead of myself; the treatment isn't cheap, it takes a lot of time, and I have no idea if it actually works or how long the effects last.
In this situation, it would be incredibly helpful to hear from others who have tried this specific therapy, but I haven't found anyone. That’s why I wish there was a site for this—not a site run by some herbalist or pharma rep, but a place where patients themselves share their experiences. I think that would help weed out a lot of the scammers and dangerous treatments.

Chris Morgan67 said:...if you decide to take this on, I'd be happy to share a lot of useful info. At least theoretically speaking, I feel like I've mastered the ins and outs of this condition😳 ...

The reality is, I can't pull this off alone either. I've worked on massive projects before, so I know one person can't juggle all these moving parts. Thanks for the offer, though—I'll be leaning on you👍.
Does anyone have connections to specialists who might want to get involved (strictly educational, no ads allowed, obviously)?
Any specific ideas for what we should actually cover? What kind of information was hardest for you guys to track down when you first started (or even now)?
Do you think it would make sense to start a national patient advocacy group or an association for families here in the US?

Addition:
We can handle a lot of the heavy lifting ourselves. We could act as a central hub for all publicly available data regarding the disease, medications, and various therapies. We could also host a forum where people swap personal experiences, discuss standard treatments versus alternative methods, and just generally trade insights...
In my opinion, the most critical thing will be bringing experts on board—people who can jump in occasionally to write about new treatments and answer specific questions.

Based on everything I know now, I'm certain of one thing: psoriasis isn't just one single issue; it shows up in so many different forms and severities. Plus, treatments are incredibly personal—what works for one person might do nothing for another. Because of that, the whole goal of this project (whatever we end up calling it) should be to gather as much data as possible and organize it logically.
Who knows, maybe someone could even use this research for a Master's thesis🙂...

So, I’ve managed to skim through almost every post in this thread (though I definitely glossed over a few). I originally landed on this forum looking for answers about psoriasis, but I have to admit, I'm finding way more bickering than actual information. That said, on our specific site, this remains the best resource we have for psoriasis info.
We’ve been dealing with this for just over a year now. Unfortunately, it’s not me struggling with it—it's my son. I say "unfortunately" because I think he’s having a much harder time with it than I would at my age. My wife has a bit more background here since her father dealt with severe psoriasis (he's symptom-free for quite a while now), so when our kid was first diagnosed, she honestly went into a total panic.

In my search online so far, I've run into mountains of contradictory advice. One thing helps one person but hurts another; one group swears by a certain method while others claim the exact opposite; some say it's incurable while others argue that's not true, and so on.
Basically, it's a sea of misinformation and very little substance.

My question (mainly for those who have been following this topic for a while): Does it make sense to launch a dedicated website specifically for psoriasis? (If one already exists, I haven't stumbled upon it yet). I'm thinking of a hub that gathers all the relevant medical papers in one spot, lists and explains various medications and treatments, offers expert advice, includes a forum (obviously), and things like that.
Of course, the goal would be to find doctors, herbalists, and other specialists willing to contribute content. But more importantly, we'd need a crew of volunteers to keep the site updated, organize the articles, moderate the forum, and lobby for professional input and expert advice. As for the costs, I don't see an issue there—you can consider the design and hosting part handled.

To repeat: Is there any interest in a project like this, and would anyone be willing to volunteer?