Replies to This Discussion

Permalink Reply by GL Wilbert on August 3, 2013 at 12:02am

Hello Jon,,

Studies have shown over and over that most SCD patients are UNDER- MEDICATED!

I recently took part in a study from the University of California at San Francisco in which this ISSUE came up OVER and OVER. I spent much time online  and phone contact with the Director of this study. While I understand what you are saying, the TRUTH is NOT much will change or plan to change because:

"THERE IS NO MONEY IN CURES!"

Tell me the last DISEASE that was CURED??? (One by Vitamin D the other with Vitamin C)

There is MILLIONS to be made in TREATMENT AND UNDER-TREATMENT!!!

Cancer, Leukemia, Sickle Cell and Others are all Treatable Diseases with the EMPHASIS on Treatment. Don't expect any changes but expect to be treated much the same unless you and your Doctor focus on PREVENTABLE MEDICINE.

Get yourself a better Doctor...

THANK you LORD that I have two Doctors here in Dallas that do just that. My Hemoglobin has moved from 8.4 to 12.8 without any prescriptions because we focus on preventable medicine using all natural supplements.

Example:

Don't wait for a infection to overtake you but be pro-active by using supplements that protect you from such.

Don't wait for inflammation (pain) to overtake you but be pro-active by using supplements that protect you from such.

Don't wait for organ damage and failure but be pro-active by having a Doctor who run test on your Heart, Liver Kidney, Gallbladder/Spleen on a regular basis. (This is included in most WELLNESS VISITS)

KNOW YOUR LABS:

What is your Hemoglobin Number?

What are your B-12 Folate Number?

What is you Vitamin D3 Number?  What about C-Reactive protein? What is your Homocysteine Number?

When these numbers are right there will be no infection or pain to complain about! If so you will have the right doctor to jump in and control the problem with REAL TREATMENT!

Inflammation and Infections are the "REAL KILLERS" .... Not Sickle Cell Disease! Every GOOD Doctor Knows this... DO YOU? 

PLEASE PEOPLE LISTEN!

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Permalink Reply by Jon on August 9, 2013 at 2:10am

Hi Gilbert,

Thanks for helping reminding us that prevention is better than cure, highlighting all the important preventative methods one should be on point with in avoiding SCD crises.

But please I hope you are not thinking that my posting on the pain machine idea is suggesting that its a  SCD crises preventative invention, because it is far from it.

This is just an invention to help aid SCD caregivers in determining when someone, especially SCD sufferer is in pain and what the pain level is instead of the famous scale of 1-10, (most especially when one is having a Chronic Chest Syndrome (CCS), that's having a SC crises in the chest, that's for people who don't know what it is or haven't experienced it and I pray nobody does because it can be very fatal as the only way to address the pain is for the person to be in a medically induced coma), I know all my SCD warriors are tired of, directly or indirectly insinuating they're liars, when they are actually in excruciating pain and these caregivers can't phantom that  someone can be in so much pain when in fact we truly and really are in pain, and they, that is the 'caregivers' thinking were just addicts craving for a fix all the time.

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Permalink Reply by Pam on August 8, 2013 at 9:57pm

Have you looked into grants? Either from private / federal sponsors.

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Permalink Reply by Jon on August 9, 2013 at 1:21am

Hello Pam,

Thanks for the advice and feedback, the answer to your question is, yes I have, can't even put a grant application in until I get patent, so I'm currently going through that stage.

What I would reply like to know from you and other SCD warriors is your views on this kind of invention, if this type of machine exist do you feel it will help SCD sufferers, keeping in mind that its not a machine to prevent crises but just to aid in detecting pain and pain levels, eliminating the famous legacy method i.e scale of 1-10 of asserting pain levels.

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Permalink Reply by Pam on August 15, 2013 at 12:35pm

I think it is an excellent invention and that it would benefit patients.

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Permalink Reply by Austyn Hart-Tinsley on August 15, 2013 at 6:38pm

 Hey Jon,

I think that your invention may have some benefits but my thought has always been for something that could test our hemoglobin number, something like what you use for testing your diabetes level. I feel that that could help a SC warrior know where they sit and what steps they may need to take, like should I go to the hospital now or can I do something that may help first, or even know what level we need to be transfused. I think your invention may have benefits for others as well, but who is to say that his/her 10 is not my 5 or the other way around. I think that this invention could have some negative effects that may need to be explored. “Yes” we all have pain but your 6 could be my 3 and my 5 could be someone else 10. Then what would the doctors do. Start comparing us to each other when we know that’s not what they should do. Just food for thought hope that helps. 

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Permalink Reply by Jon on August 16, 2013 at 1:36am

Hey Austyn,

Thanks for the feed back, love your response that was a great point you highlighted, it is very true we all have different pain thresholds and the one about the hemoglobin count will look into it and get back to you. Thanks for the tip. This is how we can all help each other, lets brainstorm ideas to help ourselves, if I can't do it there has to be someone out there who can, we got geniuses amongst us people, no one will help us except we help each other....

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Permalink Reply by stephanie eccles on November 5, 2013 at 12:42pm

I have a question, maybe you have addressed it in your research in designing the machine.

Seeing that every individual has a different pain threshold, how does the machine differentiate for everyone's idea of what pain at level 5 means?

I have been told by doctors that some SCD patients have high thresholds while others are the opposite and every little thing is like excruciating pain.

I am curious about how the machine will deal with that. Because it may monitor and say that when so many neurons are responding that is recorded as a scale of 3 while the patient is actually feeling it as a 10.

Hope you understand and that this question is helpful to you in the long run.

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Permalink Reply by Jaygo on April 5, 2015 at 3:08am

OMG, I've heard this a lot.. "You don't look like you're in pain", I was even told once, by a nurse I should be careful how i dress, If I'm dressed to nice I would look like someone who's sick or in pain, so the doctors won't see my need as an emergency. I've have a very bad experience in the Hospital when i was young. So bad it traumatized me and i passed out. Ever since then, I wouldn't say i have a phobia of the ER. But every time i think of going, I remember that experience along with others I Experienced as an adult. I do whatever i can to avoid it completely. I must say, Just thinking about them, and seeing others with these same experiences I swear I want to just Break my laptop and scream. I feel like SS patience experience very bad pain, and reluctantly go to the ER only to get mentally and emotional abused by those who are suppose to be there and sworn an oath to care for us. as well as being accused of being some type of strung out drug addicted..

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