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iheartcats

Brittany Murphy + Dysautonomia

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Wow, how observant and I see what you're talking about - looks like she has pooling in her hands.... this is how my hands and feet often look (and I'm sure a lot of us). And you're right - a celebrity spokesperson would be very helpful.

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@imapumpkin, i can speak from personal experience. My POTS cause a very disabling breathing issue, as well as low IgG,immune and I got Pneumonia 8 or so months ago and it was the scariest thing in the world to have them both at the same time. Ppl with any kind of breathing issue are more susceptible to complication with pneumonia. And unlike asthma or COPD rescue inhalers dont work well for POTs breathing issues.. Its a dangerous scenario and if she had it may have confused her and may have left her more vulnerable..

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Im Brittany's brother, and I made the video...The video was made with the specific intent of getting the word out there about Dysautonomia ... we also had help from Inside Edition who also did a piece on with me, on Britt, and dysautonomia, its on Youtube.com/jeffbertolotti, feel free to utilize my video in getting attention to this illness.., but I cant speak for Inside Edition as to their property and how they feel about it being used...

In no way were we trying to state Britt died from dysautonomia, she died of pneumonia, plain and simple...Perhaps the editor could have crafted the video better in terms of any confusion...

Britt, myself, and our grandmother have dealt with this illness...The video is just a tool to help with awareness about the disease itself. Britt had it, I have it, and people need to know this exists...Im sure my sister would want to see her passing help others to avoid the self doubt, misdiagnosis's, and the general stigma that comes along with an illness that many doctors dont even know exists, let alone treat correctly...I'm fully aware of all the medical data in reference to my sisters health and death, she was after all, my sister, and I know the symptoms she had been dealing with for many years before she passed...So in pushing ahead with this illness myself for many years now, and seeing my sister get hammered like she did both on the movie set, and in her personal life, I felt this was the correct thing to do...

God Bless

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Hi Jeff, Welcome back. I think we all appreciated you sharing yours and Brittany's story and your tips for coping with Dysautonomia. I loved your sister's movies and though I know she was acting you could still see her for the sweet adorable person she was behind her character.

I was aware that it wasn't the dysautonomia that took her. My own diagnostic process has shown though that there may be a possible connection when the dysautonomia's cause is secondary to another more serious illness. In the last few years I was finally tested for a primary immune deficiency called CVID. It is often associated with other autoimmune diseases that are difficult to diagnose due to the bodies inability to create the typical auto antibodies used to diagnosis those diseases. In my case I also developed small fiber autonomic neuropathy diagnosed by skin biopsy, due to my body attacking those nerves. These conditions seem to like to party together.

Primary immune diseases often go undiagnosed and cause uncontrolled infections like pneumonia that can lead to a rather sudden death. I had lots of infections over the years and consider myself lucky that one of them didn't get bad enough to take me. I now get monthly ivig infusions to replace the defective ones my body doesn't do a good job of making. I also am of italian decent and found out I was homozygous for a gene defect called MTHFR, which is looking like it may also be a factor in my co-illnesses.

We are fortunate to live in a time where the science is evolving on cause and that we as patient's can help each other and not just rely on a doctor that may not be aware of the confounding nature of dysautonomia. I'm grateful you and Brittany's story has helped create awareness. I wish we'd been around to help her when she was alive.

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Well, the dysautonomia may not have caused her death, but may have made her more likely to die from the pneumonia b/c :

if she was on medications that affected her heart rate, this could have aggravated her pneumonia b/c pneumonia already affects your heart rate negatively.

I had no idea she suffered from this though, and I'm definitely grateful to her brother for bringing attention to it.

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Hi Jeff, Welcome back. I think we all appreciated you sharing yours and Brittany's story and your tips for coping with Dysautonomia. I loved your sister's movies and though I know she was acting you could still see her for the sweet adorable person she was behind her character.

I was aware that it wasn't the dysautonomia that took her. My own diagnostic process has shown though that there may be a possible connection when the dysautonomia's cause is secondary to another more serious illness. In the last few years I was finally tested for a primary immune deficiency called CVID. It is often associated with other autoimmune diseases that are difficult to diagnose due to the bodies inability to create the typical auto antibodies used to diagnosis those diseases. In my case I also developed small fiber autonomic neuropathy diagnosed by skin biopsy, due to my body attacking those nerves. These conditions seem to like to party together.

Primary immune diseases often go undiagnosed and cause uncontrolled infections like pneumonia that can lead to a rather sudden death. I had lots of infections over the years and consider myself lucky that one of them didn't get bad enough to take me. I now get monthly ivig infusions to replace the defective ones my body doesn't do a good job of making. I also am of italian decent and found out I was homozygous for a gene defect called MTHFR, which is looking like it may also be a factor in my co-illnesses.

We are fortunate to live in a time where the science is evolving on cause and that we as patient's can help each other and not just rely on a doctor that may not be aware of the confounding nature of dysautonomia. I'm grateful you and Brittany's story has helped create awareness. I wish we'd been around to help her when she was alive.

For sure the Immune system, and the ANS are married and dont always get along, in my case their fighting all the time...lol...I almost bit the dust 2 years ago from ulcerative Colitis, and it wasent a pretty way to go... I went on the meds when I was in the hospital... 20 years ago the doctors told me I needed to take them, but no, I dident listen...I guess Im just a hard case. But Im still taking care of the dysautonomia with exercise, diet, hydration, stress reduction, and strict sleep schedule, it seems to be working well...

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Thanks from me too for bumping this. Jeff explained dys very well even though we have a range of symptoms as we know. No one's are all alike.

I just wish I was able to have Jeff's faith in a god. I'm an atheist. I often envy those with a belief in a higher being but I can't believe. The reason for envy: I think it must make it just a little bit easier to believe someone/something is looking out for you and that being able to trust in this takes away some of the stress. But I just can't make myself believe.

Thanks for all the positive feedback, and kind words guys.

I have to say, my Faith is my own personal way of living. Being in the Arts all my life, most of my friends over the years, and even today, are Agnostic, or atheist. And I dont ever remember any of us having even the slightest difficulty exchanging views on things in this area of life...I dont subscribe to any form of judgment on anyones choices in life pertaining to Faith, or lack of Faith. But I have to say over the last 15 years, or so, in and out of hospitals with Dysautonomia and Ulcerative Colitis, (and nearly dyeing from UC 3 years ago) my Faith made the worst of it tolerable, and even free of the fears that go with sever illness, and the very real possibility of not making it out of the hospital. In short, God is Love, and Faith is trust, and if you dont want to deal with God, just deal with whatever Love you have around you, friends, wife, kids, and so on...Because when all is said and done, thats the only real thing we have on this rock...Thanks for your post my friend...

PS...Theirs a good meditation CD out there called Holosync, The Awakening Prologue...It really helped me with getting outside the stresses of this dysautonomic circus. They have several other levels that are way over priced and arrant near as good as the Awakening Prologue that they push pretty hard when you order the Awakening Prologue...Dont waste your money, ask them for the free introduction CD and dont let them sell you on their ****...lol

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Hi Jeff,

Thank you so much for bringing more of an awareness of dysautonomia to the general public and for sharing your story. What a tragic time in your life to help spread the word about a little known disorder. I'm so sorry for the loss of your sister Brittany. She did seem like a very sweet person.

Faith, family and friends is what gets me through this very challenging disorder.

Janet

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