Kickas.org Forums Active Threads

Good to see you posting...

Hope you have a pain free year as well!

Tim

I haven’t been on here for many years also and have been on Biologics —Remicade for years, which worked so well, and then I got a cancer diagnosis last Jan ‘24, and I had to get off my biologic also. I had stage 4 Ovarian Cancer and am happy to say that I beat it! My pain in my body from the AS was managed pretty well by the chemo, since it kills your white blood cells. Then in Sept I got the wonderful news that the cancer was gone and I am now taking the maintenance infusion of Avastin for a year. I did develop neuropathy in both my hands and my feet, and my organs were being affected too—I am still working on that. However, my body was feeling a LOT of pain, especially in the kidney and rib areas so I asked my PC,my Oncologist and my Rhuemy if I could get back on the Remicade, and I was told no to the Remicade, but I could try another Biologic that was different. They put me first of all on a Cosentyx sample and it was helping some but not enough. Plus, my insurance wouldn’t cover it because it was an at home shot instead of a clinical applied medicine. Then I got approval from all my doctors and from my insurance company to try Simpony Aria infusion, as it is given in a clinical infusion situation. I was feeling much better in 24 hrs and has been working well for me since. I am turning 69 tomorrow and I will never again complain about my age. I will be grateful for every birthday, and every day I can enjoy being a grandma to my noisy, messy, funny and fun little grands. Celebrate everyday! Be your own advocate and ask for what you feel you need. I have been blessed that my doctors have all consented to work together and continually work together at getting and giving updates that they share. I hope and wish for you all to have that and advocate for that. It was good to get back on and share. Laurie

Things a bit better with new president... I am not much political, but not having triple digit inflation is very much welcomed. More trust in the new government than the old that was very corrupt.

Petty crime all around.. just need to be smart and not look like an "easy pick" when on the streets, 18 years here I have not had an issue yet... but have seen some first hand and even in neighborhood entries at times. I feel very safe in the house with dog and alarm.

Wish could post some pics here easily of all my native plants and butterflies... my new passion the past several years.

Miss the Vegas reunions... good times.

Best to you and family!

Tim

Hello Kat,

Great to see you posting... belated congrats on the album! Good luck on one woman show and the book... the book sounds so interesting!

Best to you and keep Kicking some AS.

Tim

Greetings All

I have a very strange technique learned from an Angel, Yes that's correct an Angel who helped me before to straiten my back. It warmed the center of my forehead for about 30 minutes which felt like pure love really and my spine began to loosen up completely ( At that time my spine was not fused and A.S was really active). Time passed and my A.S continued over many years and my spine degraded over time. The Angel didn't cure me but it help me over a long period. I guess the reason is because A.S is genetic.

For those that don't belive in Angels etc thats fine and great.
Anyone wanting to know more just Ask.

Whats important from my experience is that I learned that if you warm the center of your forhead for a period at a point, you feel relaxed, pain relief in your neck and back. I couldn't simulate the complete experience just the warm feeling on the forehead which is similar ( Excluding the bliss feeling and level of effectiveness ).

I used a temperature controlled soldering iron with a chiseled tip @ around 65-70 deg C hot enough so it doesn't burn the skin on the hand on the lowest setting on the soldering iron, then placed it on the center of the forehead ( you could move it around that area to which feels best)
long enough to feel some kind of relief. I found it does work.

All the best

Lee

Greetings everyone. I am a long term AS sufferer that started getting symptoms as a child but was not diagnosed properly until my late 20's. Now I am over 60.

Looking for your feedback on research privacy methods. First I am going to drone on a bit with some background. The question is at the end:

As someone who has worked in the health field I have noticed that tons of research is now available on related illnesses but AS basically ignored or grouped in with other types of Arthritis. In fact in one particularly promising area where researchers have discovered important and powerful intervention for similar diseases only a single AS study is available while literally thousands of of research papers have covered everything else but.

I've been waiting for almost 60 years for actionable research. Ironically we, AS suffers, are way always ahead of the research game. We and IBS/IBD suffers figured out the diet links long before research backed up our real world wisdom.

A lot of potential and powerful new approaches are being used today for similar problems but no studies that include people with AS are currently on the "todo" rostero that I can see. #$&K that! We can do our own!!!

All that said, I value your option and would love to have you participate but first I need to hear from you regarding your privacy and how you want that handled.

If you want to participate as an organizer and/or participant let me know.


Here you are.



# Brief Summary of Data Handling Options

Below is a short overview of the different ways we can handle your data to protect your privacy, along with how these methods relate to HIPAA (Health Insurance Portability and Accountability Act) and the GDPR (General Data Protection Regulation).

---

## 1. Anonymization

- **What It Means:** We remove or transform all identifying information so that it’s impossible to trace data back to any individual.
- **Pros:**
- Strongest privacy protection under both HIPAA and GDPR; truly anonymized data are no longer considered “personal data” in most cases.
- No risk of re-identification.
- **Cons:**
- We cannot re-contact you or link additional information to your data if you want to update or withdraw it later.
- Follow-up research for your specific data is not possible.

---

## 2. Pseudonymization (Shared “Crosswalk”)

- **What It Means:** We replace your identifying details with a code. A separate, secure “crosswalk” file links the code to your identity.
- **Pros:**
- Lets us protect your identity while still being able to re-identify you for follow-ups (e.g., additional surveys or data updates).
- Complies with HIPAA and GDPR, though data remain “personal” because re-identification is possible.
- **Cons:**
- Requires careful security measures (the crosswalk must be stored and accessed securely).
- There is a small risk of re-identification if the crosswalk were ever compromised.

---

## 3. Individual Crosswalk (Participant-Controlled)

- **What It Means:** Similar to pseudonymization, but **you** would hold your own unique key or code. We would not keep a master file.
- **Pros:**
- Increases your control over re-identification—only you can decide if and when to reveal the key.
- Still meets HIPAA and GDPR requirements as a form of pseudonymization.
- **Cons:**
- If you lose your key, we cannot re-link your data for follow-ups.
- Researchers would not be able to directly contact you would have to contact them
- Re-identification is still possible if the key is used, so it’s not fully anonymized.

---

## Share Your Preference

We want your input on which data handling method you feel most comfortable with:

1. **Anonymization:** No future re-identification or follow-up possible.
2. **Pseudonymization (Shared Crosswalk):** A coded link we can use for follow-ups.
3. **Individual Crosswalk (Participant-Controlled):** Only you hold the key to re-identify your data.

**Thank you for taking the time to review these options!** Your choice helps us respect your privacy preferences and ensure our research meets ethical standards under HIPAA and GDPR.

Thank you for your time!!! Just respond in the thread. It may take a while for the research survey itself, if you are interested in participating in some pre studies, let me know and once we have decided on our privacy stuff I will contact you here... All the Best by friends!