Show #51 - Hidradenitis Suppurativa: Interview with Dr. Philippe Guillem

[theos]

This was a great show. Hopefully, many people will be helped by it. I was cracking up as Atrieides was telling his story. Such a great sense of humor on him. It's good to hear that healing and learning can bring about so much mirth.

 

[Carl]

Thanks again for the fun and interesting show guys :).

Anyone who prefers to read can find the Initial Transcript attached here. Dr. Guillem was rather hard to understand with the French accent, filtered over the phone, and then filtered again over BTR. I managed to get the vast majority of it, and the gist came through very well.

 

[Yas]

Anyone who prefers to read can find the Initial Transcript attached here. Dr. Guillem was rather hard to understand with the French accent, filtered over the phone, and then filtered again over BTR. I managed to get the vast majority of it, and the gist came through very well.

Thank you Carlisle!

 

[Angchop]

Thank you so much for the transcript!

 

[lilies]

Just glad I wasn't too over the top all the time. In the beginning I talked a bit much, but there were so many details, I can easily get lost in them. It's been a pretty long road with the health stuff. Hope it benefits some people!

Jason, please tell the story of that clinic where old people were treated in a way. You mentioned at [23:00]. Was really interesting, but obviously there was no time on the show:

"That was like the most horrible experience in any hospital in my entire life. [..] But the way like the other people were treated. There was this poor old guy, man... [..] The stories that I could tell about what happened in that clinic."

 

[Laura]

Jason, please tell the story of that clinic where old people were treated in a way. You mentioned at [23:00]. Was really interesting, but obviously there was no time on the show:

"That was like the most horrible experience in any hospital in my entire life. [..] But the way like the other people were treated. There was this poor old guy, man... [..] The stories that I could tell about what happened in that clinic."

Jason is away on business (it's so nice to be able to say that, you know?), and he'll respond when he returns. But the short version is that, as sick as he was, he ended up having to advocate and agitate for decent patient treatment because he couldn't stand to see other people suffering ill-treatment.

 

[SeekinTruth]

Just got done listening to this. Thanks for another great show! Jason was really funny, but I could also imagine how horrible the experience was over the years.

And I'm finally caught up with the radio shows!

 

[Laura]

Just got done listening to this. Thanks for another great show! Jason was really funny, but I could also imagine how horrible the experience was over the years.

Let me just say that it was unremitting suffering for over 13 years. How Jason survived those terrible and aggressive surgeries and kept his sense of humor is amazing to me. Even when he was in the absolute worst pain, he could joke about it. Well, there were a couple of times when he was at the very end of the rope, but he remained pretty rational. I guess it is a testament to how suffering brings out the best or worst in a person depending on what is inside. When he was in horrible pain, threatened with surgery that might have changed his life forever, he was still using what energy he had to defend other patients in the clinic who were not being treated well.

Sometimes, when you get to a sort of resolution of something so awful that has affected your life for so long, you look back and wonder how it was survived. It was mainly Jason who suffered physically and psychically, but there were also many side-effects it had on the entire family. As his mother, I can say I spend a lot of time blaming myself for 1) passing on auto-immune genes; 2) not having recognized that there was such a problem and how serious it was; it doesn't matter that he was hiding it from everyone, as a mother, you are supposed to know things; 3 ) not being able to fix it. This last is probably the worst. At one point, he and I both thought he really might die. And it was a real possibility under the circumstances of massive, systemic, spreading infection. I would have given my life to save him from such pain and suffering but unfortunately, the universe doesn't allow such trades. I knew I couldn't break down because I had to stay alert to fight FOR him. And the rest of the family was pretty much in the same attitude. It was hard. Plus, because of the nature of the condition, we weren't talking about it for years, just suffering and dealing with it privately. So all the while we are doing that, we are still having to take care of "business", our work, keep things going, and spend a lot of time helping other people. I remember writing once about how hard it is for a mother to deal with a child who is suffering because of genetics but I was unable to explain how and why I was familiar with this.

Oy. What a life this has been thus far.


ADDED: I wanted to add that, since there is such a strong emotional component to this condition, i.e. stress easily triggers inflammation which then leads to an auto-immune reaction, it is obvious that the massive flare-ups of the past few years may be directly related to the police investigation and the fiscal audit. So, for those people, such as Lisa Guliani, who think that we just have such an "easy life" and what we are doing isn't important, let me just point out that such a view is entirely contradicted by the facts on the ground. And believe me, if I wasn't dedicated to what I was doing, if I didn't really think that it is the only possibility for a future for my children, and everyone's children, I would have changed course a long time ago. The price we pay to just continue our work of helping others to wake up and possibly change the course of events, is very, very high.

 

[SeekinTruth]

I hear you Laura. You guys have been "going through the fire" over and over.

I kinda know what it feel like too. As I wrote about in the Life Without Bread thread when you guys first started posting about HS, I had something similar, but mine was probably "pilonidal disease" or something similar (fistula on my tail bone area). It started at the last year or two of high school, and I finally had surgery when I was around 22 years old. Man, they cut out a huge amount of flesh on my lower back - like a 5 inch open wound. It was hell for the month after the surgery, especially when the stitches were still in. Besides the pain of the wound, any movement would pull on the stitches causing MORE pain. Don't wish it on my worst enemy, as they say.

 

[Nancy2feathers]

Jason, please tell the story of that clinic where old people were treated in a way. You mentioned at [23:00]. Was really interesting, but obviously there was no time on the show:

"That was like the most horrible experience in any hospital in my entire life. [..] But the way like the other people were treated. There was this poor old guy, man... [..] The stories that I could tell about what happened in that clinic."

Jason is away on business (it's so nice to be able to say that, you know?), and he'll respond when he returns. But the short version is that, as sick as he was, he ended up having to advocate and agitate for decent patient treatment because he couldn't stand to see other people suffering ill-treatment.

Just got done listening to this. Thanks for another great show! Jason was really funny, but I could also imagine how horrible the experience was over the years.

Let me just say that it was unremitting suffering for over 13 years. How Jason survived those terrible and aggressive surgeries and kept his sense of humor is amazing to me. Even when he was in the absolute worst pain, he could joke about it. Well, there were a couple of times when he was at the very end of the rope, but he remained pretty rational. I guess it is a testament to how suffering brings out the best or worst in a person depending on what is inside. When he was in horrible pain, threatened with surgery that might have changed his life forever, he was still using what energy he had to defend other patients in the clinic who were not being treated well.

Sometimes, when you get to a sort of resolution of something so awful that has affected your life for so long, you look back and wonder how it was survived. It was mainly Jason who suffered physically and psychically, but there were also many side-effects it had on the entire family. As his mother, I can say I spend a lot of time blaming myself for 1) passing on auto-immune genes; 2) not having recognized that there was such a problem and how serious it was; it doesn't matter that he was hiding it from everyone, as a mother, you are supposed to know things; 3 ) not being able to fix it. This last is probably the worst. At one point, he and I both thought he really might die. And it was a real possibility under the circumstances of massive, systemic, spreading infection. I would have given my life to save him from such pain and suffering but unfortunately, the universe doesn't allow such trades. I knew I couldn't break down because I had to stay alert to fight FOR him. And the rest of the family was pretty much in the same attitude. It was hard. Plus, because of the nature of the condition, we weren't talking about it for years, just suffering and dealing with it privately. So all the while we are doing that, we are still having to take care of "business", our work, keep things going, and spend a lot of time helping other people. I remember writing once about how hard it is for a mother to deal with a child who is suffering because of genetics but I was unable to explain how and why I was familiar with this.

Oy. What a life this has been thus far.


ADDED: I wanted to add that, since there is such a strong emotional component to this condition, i.e. stress easily triggers inflammation which then leads to an auto-immune reaction, it is obvious that the massive flare-ups of the past few years may be directly related to the police investigation and the fiscal audit. So, for those people, such as Lisa Guliani, who think that we just have such an "easy life" and what we are doing isn't important, let me just point out that such a view is entirely contradicted by the facts on the ground. And believe me, if I wasn't dedicated to what I was doing, if I didn't really think that it is the only possibility for a future for my children, and everyone's children, I would have changed course a long time ago. The price we pay to just continue our work of helping others to wake up and possibly change the course of events, is very, very high.

Laura, this is truly a testament of your love and strength for your family and others while still Doing and Sharing the WORK,( plus everything else you were dealing with!) As a mother, your above words touched me deeply. I know the feeling of not wanting your children to suffer (especially the way Jason did) and take their pain for them. I`m so glad Jason is doing better and telling his experience so hopefully others can in some way benefit.

 

[Laura]

Laura, this is truly a testament of your love and strength for your family and others while still Doing and Sharing the WORK,( plus everything else you were dealing with!) As a mother, your above words touched me deeply. I know the feeling of not wanting your children to suffer (especially the way Jason did) and take their pain for them. I`m so glad Jason is doing better and telling his experience so hopefully others can in some way benefit.

The hero here is Jason who came through this with grace and humor and no doubt, if the Cs are correct about suffering, some highly amplified DNA! The second hero was Chu who nursed him through the ordeal. I'm not sure I could have even done that. I was so shaken when I saw what the surgery had done to him, I nearly passed out and I don't get fainty about much!

 

[irjO]

Let me just say that it was unremitting suffering for over 13 years. How Jason survived those terrible and aggressive surgeries and kept his sense of humor is amazing to me. Even when he was in the absolute worst pain, he could joke about it. Well, there were a couple of times when he was at the very end of the rope, but he remained pretty rational. I guess it is a testament to how suffering brings out the best or worst in a person depending on what is inside. When he was in horrible pain, threatened with surgery that might have changed his life forever, he was still using what energy he had to defend other patients in the clinic who were not being treated well.

Sometimes, when you get to a sort of resolution of something so awful that has affected your life for so long, you look back and wonder how it was survived. It was mainly Jason who suffered physically and psychically, but there were also many side-effects it had on the entire family. As his mother, I can say I spend a lot of time blaming myself for 1) passing on auto-immune genes; 2) not having recognized that there was such a problem and how serious it was; it doesn't matter that he was hiding it from everyone, as a mother, you are supposed to know things; 3 ) not being able to fix it. This last is probably the worst. At one point, he and I both thought he really might die. And it was a real possibility under the circumstances of massive, systemic, spreading infection. I would have given my life to save him from such pain and suffering but unfortunately, the universe doesn't allow such trades. I knew I couldn't break down because I had to stay alert to fight FOR him. And the rest of the family was pretty much in the same attitude. It was hard. Plus, because of the nature of the condition, we weren't talking about it for years, just suffering and dealing with it privately. So all the while we are doing that, we are still having to take care of "business", our work, keep things going, and spend a lot of time helping other people. I remember writing once about how hard it is for a mother to deal with a child who is suffering because of genetics but I was unable to explain how and why I was familiar with this.

Well if I admired you both, I admire you even more... I mean I can't just think been in a situation like that! this statement touch my heart, I'm not a father but if I was, I couldn't know how to deal with something like this, I think this help me to meditate about real difficult situations! wey to go Jason and Laura!

 

[SMM]

Really good show, thank you

It was great hearing Jason's experiences and his humour surrounding it.

What effects could detoxification and an infrared sauna blanket have with this condition? It sounds very complex and acting at a deep level to demand surgery or other long-term treatment options. With the lack of understanding about it and incompetence of mainstream medicine I can imagine how sufferers can feel excluded and unwilling to network about it.

 

[Laura]

Really good show, thank you

It was great hearing Jason's experiences and his humour surrounding it.

What effects could detoxification and an infrared sauna blanket have with this condition? It sounds very complex and acting at a deep level to demand surgery or other long-term treatment options. With the lack of understanding about it and incompetence of mainstream medicine I can imagine how sufferers can feel excluded and unwilling to network about it.

Detox, sauna, diet, have little to no effect on the condition IF the main triggering factor - stress - is not managed. And stress management requires a lot of things including managing sleep length and time.

 

[l apprenti de forgeron]

Just got done listening to this. Thanks for another great show! Jason was really funny, but I could also imagine how horrible the experience was over the years.

Let me just say that it was unremitting suffering for over 13 years. How Jason survived those terrible and aggressive surgeries and kept his sense of humor is amazing to me. Even when he was in the absolute worst pain, he could joke about it. Well, there were a couple of times when he was at the very end of the rope, but he remained pretty rational. I guess it is a testament to how suffering brings out the best or worst in a person depending on what is inside. When he was in horrible pain, threatened with surgery that might have changed his life forever, he was still using what energy he had to defend other patients in the clinic who were not being treated well.

Sometimes, when you get to a sort of resolution of something so awful that has affected your life for so long, you look back and wonder how it was survived. It was mainly Jason who suffered physically and psychically, but there were also many side-effects it had on the entire family. As his mother, I can say I spend a lot of time blaming myself for 1) passing on auto-immune genes; 2) not having recognized that there was such a problem and how serious it was; it doesn't matter that he was hiding it from everyone, as a mother, you are supposed to know things; 3 ) not being able to fix it. This last is probably the worst. At one point, he and I both thought he really might die. And it was a real possibility under the circumstances of massive, systemic, spreading infection. I would have given my life to save him from such pain and suffering but unfortunately, the universe doesn't allow such trades. I knew I couldn't break down because I had to stay alert to fight FOR him. And the rest of the family was pretty much in the same attitude. It was hard. Plus, because of the nature of the condition, we weren't talking about it for years, just suffering and dealing with it privately. So all the while we are doing that, we are still having to take care of "business", our work, keep things going, and spend a lot of time helping other people. I remember writing once about how hard it is for a mother to deal with a child who is suffering because of genetics but I was unable to explain how and why I was familiar with this.

Oy. What a life this has been thus far.


ADDED: I wanted to add that, since there is such a strong emotional component to this condition, i.e. stress easily triggers inflammation which then leads to an auto-immune reaction, it is obvious that the massive flare-ups of the past few years may be directly related to the police investigation and the fiscal audit. So, for those people, such as Lisa Guliani, who think that we just have such an "easy life" and what we are doing isn't important, let me just point out that such a view is entirely contradicted by the facts on the ground. And believe me, if I wasn't dedicated to what I was doing, if I didn't really think that it is the only possibility for a future for my children, and everyone's children, I would have changed course a long time ago. The price we pay to just continue our work of helping others to wake up and possibly change the course of events, is very, very high.

Thanks Laura and Jason and Chu. It is very admirable your courage Jason (also your unbreakable sense of humor) and of the entire family of the Chateau. Truly, your efforts will bring great rewards.
Thanks for another great show.