Feel This Pain: S4E1 Acute Intermittent Porphyria

One person I spoke to about this condition said, "the pain is incompatible with life." That about sums it up, don't you think?
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Ken McKim is not a doctor, nor does he play one on TV. Ken is an advocate for anyone with a chronic illness.
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Learn more about Acute Intermittent Porphyria:

American Porphyria Foundation

American Porphyria Foundation - Searchable Medication Database

Learn About Acute Intermittent Porphyria (AIP)

Exploration Health: Acute Intermittent Porphyria (AIP)

About This Show
The Feel This Pain series is my attempt to get people "inside the heads" of those who suffer from a chronic illness by explaining in a (hopefully) relatable way what it feels like to live with that illness. It came from a personal place; my wife (who has Crohn's Disease) kept having to explain repeatedly, to the same people, what her illness is and what it means to have a chronic illness (in other words, "No, I'm not better/cured/over it").

I haven't done any new episodes in a while, but I'm thinking of doing a new series of these soon.

You can find me at:
Facebook

My Other Shows:

Rainy Day Brain (current show, updated weekly)

Dear Healthy People (20 Videos)

One Good Thing with Ken McKim (15 Videos)

The Slow Death of Compassion (4 Videos)

[jackmeloff]

I was diagnosis 1999.with HCP/AIP PORPHYRIA ..NOW IN 2019
MY LIFE IS HELL EVER DAY..!!!
BAD DOCTORS DON'T HELFVERY MUCH.. EITHER..!!!

[jayjaybongo]

Thank you very much for this video, I suffer with AIP and it took me 2 and a half years to get a diagnosis so I love seeing videos raising awareness. Wonderful video.

[jordanshain]

I was diagnosed in 2002 with AIP. It took a month to diagnose. I finally found a great Endocrinologist after a Dr told me it was all in my head. The attacks are brutal!!! The Panhematin infusions really helped me a lot. I started with PICC lines. Then a mediport. which caused a blood clot in the top chamber of my heart. I had open heart surgery to remove it at age 41. I also have Chronic Kidney Disease stemming from the AIP. Every day is a struggle!!!! Don’t ever give up! Stay strong! My kids and grandkids keep me fighting for a better quality of life!!!

[JJDigitalartStudio]

Ken how are you and your wife doing? I know that you had employment problems and that taking care of a person is a full time job. Since both of you suffer, I pray for you all the time. You have taken upon yourself the job of making others aware of chronic severe pain and the causes. I just want to thank you for all you are doing. God bless you both. JJ

[WillardTrees]

Thank you for this. You explain it quite well and I appreciate what you said about compassion.

[scarlettjune]

So, I'm not a crier by any stretch of the imagination. I'm not on any type of social media nor do I wish to be a blogger. But, after I saw this vid on AIP and read some interviews that Ken has given to certain chronic illness sites/blogs, I just lost it. I have been in a living hell since 2012. I've had more doctors, tests and drugs thrown at me than I care to recall. If it wasn't for my mother actually seeing this disease portrayed on an episode of "House" (of all things), I never would have known AIP existed, never would have told my internal medicine doc about it and would still be in a limbo of not knowing why I have: constant episodes of cyclical vomiting, excruciating pain from my bones out, continuing loss of motor skills in the hands arms and now legs. I won't go intro a diatribe of what this has been like. Ken has basically told you what this is like in a nutshell. Here is the reason this pulled so much at my heart. There IS a dying compassion in the world, but specifically, the medical field for chronic pain and illness. I have so many times thought to begin an awareness crusade to bring to light to what the DEA and other groups are creating for people like me and hundreds of thousands of others for punishing doctors for prescribing very necessary pain medications to those of us who are in a daily life struggle just to wake up and breathe. We are not drug seekers, pill-thrill junkies. We live in hell everyday, all day. You cannot imagine it if you don't have it. I am getting small amounts of specialized help from the very few university hospitals that are studying this disease, but yet to find a pain management clinic that will even consider helping me with my pain due to AIP. It is a life struggle, day in/day out. Thanks Ken. It has given me a slight bit of hope as I continue through the trials and tribulations of AIP.

[itisfinishednowtimetoclean]

I did the sunlight test urine went from Straw yellow 1st day, to amber (2nd day) to brown (3rd day)!

[scarlettjune]

I have not tried this as of yet. Hormone therapy is being considered at this time, since I am 50 and not yet even pre menopausal. I will certainly pass along this suggestion to my doctors. And I guess thank heaven for medical shows that tackle these issues, even in the comedic sense. If it weren't for my sense of humour, I'd be long gone. Thanks so much for the reply and info. Best of luck to you in the struggle😊

[edileebates]

How can i get medicaid to test/treat instead of trying to gaslight