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Is there a possibility to cure the disease, PNH?  RSS feed

 
Braden Pickard
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Hello there everyone, my girlfriend has been getting treatments for her disease, PNH ( http://en.wikipedia.org/wiki/Paroxysmal_nocturnal_hemoglobinuria) four years now, its super rough on her, and it seems like it is never-ending suffering. Its a very very rare blood disease where her red blood cells are destroyed, causing her to get treatments, where they give her artificial red blood cells into her blood stream every two weeks. This causes a very weak immune system. So I was wondering if anyone out there would be so kind to research it a little bit, and see if there is any way there is a different solution to this. I have listened to the podcasts on raw milk, and read different amazing stories, and so I feel like there should be hope and some solution to this disease, but I have no idea and need some wise advice.
Thank you so much for reading!
 
allen lumley
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Location: Northern New York Zone4-5 the OUTER 'RONDACs percip 36''
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Bradon Pickard : My heart goes out to you, that your girlfriend has to endure this condition, and you have to watch her endure the range of symptoms that comes with this disease
is horrific !

The first thing you need to try and accomplish is to have a talk with your girlfriend and get her to understand how much you WANT and NEED to be a part of Her Total Health Care
Team !

Then the two of you must convince the medical community that you both need to be informed at every step along the way. With every new Doctor, Test, and procedure there will be
a new hurdle, or gate that will have its own Gatekeeper who will unfortunately try to separate the family from the patent ! Often there are legal barriers meant to protect the
patent from actions of over zealous family and friends and some barriers are set up by Self appointed gatekeepers within the medical community. Moving forward often means daily
contact with New personal who will not initially understand that you are part of HER Total Health Care team !

There are literally support groups for everything and every condition under the Sun, Please Find and use them as a resource to help you help your girl friend !

Also With every Hospital 'visit' a Discharge Plain (to the patents home) must be filed ! These are the people who will check to see that there is Family or close friend to assist
with the patents Daily Living Activites and needs These people are generally overworked, and you must hunt them down and arrange time to talk with them generally they too
are or should be part of your girlfriends Patent Advocates. If you are not being consulted about your understanding and capabilities to help at the time a 'Discharge Plain is
made up, then you definitely need to talk to the hospital administration who WILL seek to help you solve your problem !

Again, I do understand why you have reached out to your fellow members here at Permies. It is pretty clear that this is at least related to- several diseases that have a deficiency
condition at its core, a good,well balanced 'Natural' and 'Organic diet' should be at the heart of every effort to ease your girlfriends condition, has a Nurse Dietitian been involved in
her treatment, and are you happy with that persons recommendations !

Finally you are to be commended on your desire to help at this time, for many lay people this would be a burden that they would never consider carrying! Good luck and God bless!
Big AL
 
Jennifer Wadsworth
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Location: Phoenix, AZ (9b)
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Hi Braden and Welcome to permies!

First of all, I want to acknowledge you and thank you for being a caretaker. To those of us who need caretakers, you are the most valuable and precious people on the planet.

I second Al's excellent response. I suffer from a rare autoimmune disease that is quite aggressive and causes much mischief in my life. Because I see a variety of doctors, naturopaths, acupuncturists, chiropractors, etc. it's necessary to keep an ongoing record of what's going on. This is also very helpful when a crises occurs (because they DO occur and this information can help save my life) or when I'm traveling. Because my friend knew I had this document, I was able to be treated quickly and effectively, even though I presented at the ER unconscious and thus not able to speak for myself.

Here's what's in my "Medical Journal"

1. My full name, date of birth, country of citizenship, current address and contact information (phones, email, etc)

2. Insurance Card and Photo ID - include front and back of all medical-related cards (update as needed)

3. Medical History - brief chronological recounting of medical history

4. Medications and Pharmacy Information - list all medications (including herbal and vitamins), strengths, how frequently they are taken, when they are taken, where they are taken (if you have to go to an infusion center or dialysis center, for example), if they need to be taken with/without food, etc. List pharmacy information and prescription number for each and prescribing doctor. Also list why each medication is taken.

5. Allergies: Drug, Food and Other - List all known allergies to drugs and food, including things like sensitivity to latex or adhesives.

6. Past Surgeries - List type of surgery, date, doctor and hospital for each surgery.

7. Doctors and Care Provider Contact Information - List all doctors, naturopaths, chiropractors, mental health practitioners, acupuncturists, physical therapists, etc. who are involved in your care. If you have a patient advocate, list them as well. List name, specialty, phone, fax, email for each care provider.

8. Emergency Contacts - First and last names, phone numbers (home, mobile, work), email addresses, physical addresses and relationship to you of all your emergency contacts.

9. Advanced Medical Directives - Find your state's form here: http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3289

10. Latest Labs - Copies of your latest labs and any other tests or doctors notes you want to include.

11. Symptom Tracker - List any correlation between symptoms and time of day, rest, foods eaten, exercise/lack of exercise, or anything else you were asked to track by a caregiver or track for your personal information.

12. Anything specific to your unique situation. (need a translator, not a citizen, specific dietary preferences, etc).


 
allen lumley
pollinator
Posts: 4154
Location: Northern New York Zone4-5 the OUTER 'RONDACs percip 36''
58
books fungi hugelkultur solar wofati woodworking
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Jennifer Wadsworth : W.O.W., a really great, all inclusive list, hope you are blest with Caregivers with large hearts ! L'Chiam ! Big AL
 
Braden Pickard
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Thank you so much for all the response! I really appreciate it!
 
Matt Grantham
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Location: Napa CA
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What is her diet?
 
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