COPD and Other Stuff

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Posts Tagged ‘Research’

COPD Research Study at Leicester University – New Hope for Future

Sunday, May 22nd, 2011

It is about time!  The Leicester University researcher, Prof Chris Brightling, Wellcome Senior Research Fellow is leading a team on a five year EU quest to – ultimately – individualize the COPDer treatment.  Currently, we’re pretty much given the same inhalers to help open our airways for better breathing and most COPD inhalers were developed for asthma patients – quite different from
Chronic Obstructive Pulmonary Disease.  (COPD)

I’ve taken many different inhalers over the years, none worked well – for me – as my present three inhalers.

For example, I’ve been on the same inhalers about five years – nothing newer or better has been developed and approved for use in the United States.  The last new inhaler I’ve taken for COPD was initially an incredible boost to my lungs.  The 24-hour inhaler, Spiriva, recommended to take in the morning was so powerful for me I took it at night and every morning was able to exercise three hours or so before breakfast and taking my other inhalers.  Not everyone has the same reaction and some don’t take it for various reasons – we’re all different.  This is the first time we’ve had research into our differences and I applaud and thank them on behalf of future COPDers.

These days I take it in the morning as time and COPD march on.

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“A Leicester University researcher is leading an international team in the development of a tool to help tailor the treatment of asthma and chronic obstructive pulmonary disease (COPD).

Prof Chris Brightling, Wellcome Senior Research Fellow at Leicester University and an honorary consultant based at Glenfield Hospital, is spearheading the five-year EU project, dubbed AirPROM.

According to Leicester University, the project will create computed and physical models of the whole airways system, to help scientists and doctors predict how patients might react to different treatments.

Damaged, inflamed or obstructed airways are common in people with COPD and asthma, which makes breathing difficult. The current methods to detect and treat these conditions do not always consider individual differences in the airways that make each person unique. As a consequence, people with these conditions may not receive the most effective treatment.

While scientists are working on more advanced, targeted approaches to treatment, they have been unable to match these treatments to the right patients and explain the reasons behind this.

The AirPROM research team will make a computed model of the cells in an airway and a physical model of the airways, to assess how air flows through the lungs and why it becomes obstructed in people with asthma and COPD.

By using these unique models, along with existing data from tests that measure lung capacity and highly detailed X-rays, known as CT scans, the scientists will be able test new therapies, which will enable them to tailor treatments to the individual.

The aim is to use this information to generate an extensive database that will be able to link the characteristics of different airways to a particular treatment in the future, helping health professionals provide personalized treatment for people with COPD and asthma.

These tools will also help scientists predict how the diseases will progress and the effect on the airways, to help monitor the future risk to patients.

Breda Flood, a patient with asthma and board member of European Federation of Allergy and Airways Diseases Patients Association, said: ‘This new model will help us to visualize activity in our lungs and see how our illness affects our breathing. By gaining an insight into how specific treatments will work, patients will have a better understanding of how to manage their condition in the future.’”

http://www.theengineer.co.uk/sectors/medical-and-healthcare/news/project-seeks-better-treatment-for-breathing-disorders/1008723.article

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Interesting  – We have EFFORTS (Emphysema Foundation For Our Right To Survive): http://www.emphysema.net and  Alpha 1, the inherited type of COPD:  http://www.alpha-1foundation.org/

The United States does not have a ‘Federation of Allergy and Airways Diseases Patients Association’ that I know about.

Thanks for reading… Sharon O’Hara

New Bird at the Feeder – Yesterday – New Hope for COPDers – Today


Quest for Better Health: Whatever It Takes!

Friday, August 27th, 2010

Quest for Better Health: Whatever It Takes!

The Cystic Fibrosis Research, Inc.’s recent 23rd Annual Education Conference’s rallying cry for 2010 is the best I’ve seen anywhere, for any disease, for any life standard. It gives me the nerve to publically ask for help.

Quest for Better Health: Whatever It Takes!

Following are a few quotes from the warm welcome given the Cystic Fibrosis Research, Inc. participants by S. Joseph Simitian, State Senator, 11th District that can be applied to all medical conditions.

“…event is a valuable opportunity to bring people together to share the latest information … treatment, research, and services…. applaud the conference participants, volunteers and staff …for their efforts to provide education and support for individuals living with … raising awareness … and the need for continued research, you …make a difference.”

http://www.cfri.org/pdf/ConferenceBrochureFINAL,pdf.pdf

Quest for Better Health: Whatever It Takes!

Who will join me to work together for one common goal, lose obese weight for medical and health reasons through education and practice of proper nutrition and exercise?

Each of us would become active participants by taking turns to research different nutrition and exercise topics and become a speaker to our group. We will learn and teach each other…a fun and educational commitment.

I hope that we will have professionals assist from time to time…otherwise, we’re patients helping patients.

If we are a small group, we can meet in my ex living room turned exercise room. It contains a treadmill, elliptical, recumbent trike, bow flex, dumb bells and a few other items.

The price is your time to get healthy through research, nutrition and exercise. In addition, for me, it is the support a group of like minded people can supply to help me do what I must…drop this weight. I’d like to meet at least three times a week…but I’m flexible.

Quest for Better Health: Whatever It Takes!

For more information or to offer suggestions, call 360-337-1454 and ask for Sharon.

A friend has even offered $1,000. to the person who loses the most weight in seven months.

More later… Sharon O’Hara


$150,000. Yearly Lung Drug for One Patient. P.S. Does It Work?!

Wednesday, July 14th, 2010

When is COPD not COPD?
Why does a special group measuring only 1% of all COPDers (4th leading cause of death in the U.S), get a drug costing $150,000. Per patient, per year and ongoing research. while the other 99% of COPDers get – nothing.in research dollars?

A regular COPDer should pray they turn into one of the 1% group – because there is help out there for that 1% COPD.
The two national COPD support groups were organized and are run by the same 1% group of COPDers. – alpha-1 folks..
Why the discrepancy in treatment interest by a leading respiratory hospital?

COPDers…it is NOT OKAY that a small group of us gets research dollars into real treatments for their COPD (keeps their FEV1 from dropping the study disproved)
The fact is my FEV1 numbers stayed the same for years WITHOUT a $150,000 drug.

We seem to be funding this gross negligent misuse of public funds on a small group of folks while nothing is helping the other 99% of us….no research.

National Jewish is the leading respiratory hospital in the country and has been for 12 years.
I went to their website and looked up the different statements re: alpha-1 and regular COPD.

I then called National Jewish to ask them to tell me what – specifically- they are doing for COPDers…the other 99%. They – literally – had nothing to say. I listened to silence until I quietly put down my phone.

I will ask again. Why the emphasis on research for the 1% group?

Okay – I will ask. If alpha-1 is genetic – is the majority of the people who have it Jewish?

Xxxxxxxxxxxxxxx

Alpha-1 Antitrypsin Deficiency Program

Alpha-1 Antitrypsin Deficiency (sometimes shortened to Alpha-1) is a hereditary condition that can cause liver disease in infants, children, and adults and can also lead to lung disease in adults.

National Jewish Health is one of the best places in the world to be treated for the adult lung and liver disease caused by Alpha-1. Our doctors have every necessary tool at their fingertips to diagnose and treat this condition. While we do not treat infants or children with Alpha-1 liver disease, we have a close working relationship with The Children’s Hospital in Denver and will make a referral to the appropriate pediatric liver specialist.

Alpha-1 is one of the most common inherited disorders and accounts for about 1 percent of all COPD (chronic obstructive lung disease) in the United States. Research is constantly being done to develop new therapies. Doctors at National Jewish Health have been involved in virtually every new drug evaluated for Alpha-1.

Currently trials are underway or planned to evaluate inhaled therapies and gene therapy for the condition. Our doctors and researchers are always looking for new ways to manage and treat Alpha-1 and other chronic lung diseases.

Doctors at National Jewish Health follow one of the largest groups of Alpha-1 patients in the world. The program here has been devoted to the care of families with Alpha-1 since 1981.

Since Alpha-1 is a genetic condition, we invite all immediate family members to participate in the initial visit, if possible.

“http://www.nationaljewish.org/programs/directory/alpha-1-antitrypsin.aspx
xxxxxxxxxxxxxxxxxxxx

COPD Program
The COPD Program offers comprehensive, individualized care for people with chronic obstructive pulmonary disease (COPD) including emphysema and chronic bronchitis.

As the region’s only full-service program, our goal is to help patients manage their disease effectively and to live full and active lives.

The COPD Program offers:
• Unique, collaborative approach proven to enhance quality of life.
• Personalized care plan and individualized take-home binder for every patient.
• Cutting edge diagnostic testing and latest treatments for COPD.
• Nutritional counseling.
• Specialized pulmonary and physical rehabilitation programs.
• Personalized education and group classes.
• Behavioral health and psychosocial services.
• Evaluation for potential lung volume reduction surgery (LVRS) and lung transplant.

Dedicated Team of Experts
The COPD program team of specialists are dedicated to the goal of helping people with COPD “take charge” of their breathing and regain or maintain control of their lives. We are here to partner with you to manage your lung disease in the best way possible. People with COPD can lead active and full lives.

At each visit, you will meet with physicians and/or nurse practitioners who are experts in the field of COPD.
A comprehensive personal COPD plan will be created. This plan will help you manage your COPD, with a focus on maximizing your respiratory health through education, rehabilitation, nutrition and medications. We will consider any other medical conditions or special needs you may have, and you will have appointments with other healthcare professionals. They will address medical and lifestyle issues that impact your quality of life.

http://www.nationaljewish.org/programs/directory/copd/index.aspx

More later… Sharon O’Hara


Sarcoidosis 2010 Schedule and Research Study

Saturday, January 9th, 2010

Sarcoidosis in our area has a great following of dedicated Sarcoidosis patient volunteers who work hard to share the latest research information to benefit us, the Puget Sound Sarcoidosis’ites.
For those unfamiliar with Sarcoidosis:

http://www.nhlbi.nih.gov/health/dci/Diseases/sarc/sar_whatis.html

********************************
Sarcoidosis Research Study
Pulmonary Sarcoidosis Treatment Trial
If you have been diagnosed with sarcoidosis of the lung, you may be eligible to participate in a study at the NIH Clinical Center. The purpose of this study is to determine if a widely used cholesterol-lowering agent can decrease the amount of prednisone (steroids) required to manage your illness. Eligible patients will receive a comprehensive evaluation at the Clinical Center in Bethesda, Maryland.

There is no cost to you for travel or medical testing.

For further information, please contact our research coordinator, toll free, at 1-877-NIH-LUNG (1-877-644-5864), e-mail: LungStudy@nhlbi.nih.gov, or you may call Sandra MacDonald, RN at 301-451-4899. Alternatively, you may reach the NIH Patient Recruitment and Public Liaison Office via TTY 1-866-411-1010.
**********************************

Following is the 2010 Sarcoidosis Support Group Meeting Schedule for the Puget Sound area.

Most meetings are held in the BAKER Room at Puyallup’s Good Samaritan Hospital…. 1:00pm – 3:00pm.

SARCOIDOSIS NETWORKING ASSOCIATION
GOOD SAMARITAN HOSPITAL
407 14TH AVENUE SE – Puyallup
Baker Room – 1:00pm – 3:00pm

2010 SNA SUPPORT MEETINGS

JANUARY – Saturday, 9th 1:00pm – 3:00pm

FEBRUARY – No Meeting
MARCH – No Meeting

APRIL – Saturday, 10th
1:00pm -3:00 pm

MAY – No Meeting
JUNE – No Meeting

JULY – Saturday, 10th
PICINIC at the Short Home
1:00pm – 3:00pm

AUGUST – No Meeting
SEPTEMBER – No Meeting

OCTOBER – Saturday, 9th
BAKER ROOM
1:00pm – 3:00pm

NOVEMBER – No Meeting

DECEMBER – Saturday, 11th
BAKER ROOM
1:00pm – 3:00pm

GOOD SAMARITAN HOSPITAL
407 14TH AVENUE SE
BAKER ROOM
PUYALLUP, WASHINGTON

Contact:
LYNN SHORT (ANNUAL PICNIC)
5302 SOUTH SHERIDAN AVENUE
TACOMA WASHINGTON 98408

Lynn Short, Executive Director
Sarcoidosis Networking Association
5302 South Sheridan Avenue
Tacoma, Washington 98408 USA

http://www.sarcoidosisnetwork.org/

More Later… Sharon O’Hara


Cancer Survivors? Yes. COPD Survivors? No.

Wednesday, December 30th, 2009

A government controlled Health Care System is Shudder Worthy and may have inspired the recent letter to the editor from a breast cancer survivor and doctor objecting to the cut back on mammograms for women. Their letter prompted mine and I am posting it again here.

People may not be aware of the real life discrepancies between medical conditions and one is not better or worse than another. They are all challenging to the patient and her/his medical team.
The difference is in the research and patient education.
Perhaps one day a patient can say, “I am a COPD survivor.”
For now, there are no COPD survivors.
******************************
“Debbie Belew-Nyquist, Ed.D., Bremerton and Joseph L. Johnson, M.D., Silverdale should be applauded for speaking up for their belief.

My sincere congratulation to all cancer survivors, especially lung cancer survivors.
The lung cancer patients have a higher fatality rate, I understand, due to lack of reliable early detection testing. By the time its detected, the disease is advanced.

That said: COPD (Chronic Obstructive Pulmonary Disease) kills more people per year than breast and lung cancer combined.
It is the 4th leading cause of death in the U.S., 5th in the world.

A simple and inexpensive Spirometry test done in any doctor’s office offers early detection of a disease that generally takes twenty years before a patient develops symptoms bothersome enough to mention the shortness of breath to their doctor. By then, they have already lost about 50% of their lungs.

The Spirometry test is inexpensive and offers the patient knowledge they have COPD. Early warning testing gives most patients the opportunity to stop the disease from developing further.

The glitch is many doctors will not use it, I’ve been told, because they do not believe the patient will make life style changes to stop the disease.

I think they sell us short – the Spirometry early detection, nay-saying docs do not give us the opportunity to make decisions.
They most certainly have not given us the opportunity to make the changes.

The Spirometry test shouldn’t cost more than $100.
If the simple test shows that further testing is needed that is more costly, but far less so than allowing the disease to develop further. COPD gets ugly and a slow smother to death.
Worse, the non-rolling stone COPD gathers moss.
The medical ‘moss’ of COPD acts as a magnet for the other disease stuff. Some of it is really unpleasant.

Cancer detection and research development has been alive and well.

COPD (Chronic Obstructive Pulmonary Disease) has little to no research and most of our drugs were developed for asthma, not us…quite a different disease.

“We have come too far than to start going backwards with health care.”

COPD is already backwards. It is time to bring it into the present.”

Read more: http://www.kitsapsun.com/news/2009/dec/20/my-turn-the-real-cost-of-limiting-cancer/#ixzz0bFFMSOk9

More later… Sharon O’Hara
Happy Holidays to all!


COPD Research Dollars, Senator Lincoln and Senator Crapo Sponsored

Tuesday, May 12th, 2009

COPD is international as the 5th leading cause of death in the world and the 4th leading cause of death in the United States.
There is little to no research dollars but among others, COPD has strong supporters in Senator Lincoln and Senator Crapo.

Their latest effort for COPD is the latest ” COPD Dear Colleague Letter” to ensure that at least $1 million is appropriated to CDC this year for a COPD program.

Please participate, by phone or email. The link for Senate office numbers is

http://www.senate.gov/general/contact_information/senators_cfm.cfm

http://tinyurl.com/b1lm

The following is from EFFORTS (emphysema.net) Ambassadors.

“Many professional and patient organizations (including us) are
asking that we support this call in campaign.
Some of them are the ALA ATS, COPD Caucus and all of the COPD patient
advocacy organizations. Please participate however you can.

If you are calling talking points are here:
My name is [NAME] and I’m calling from [CITY, STATE].
I’m calling today to urge Senator [NAME] to sign the COPD Dear Colleague
letter being circulated by Senator
Lincoln and Senator Crapo [CRAY-po]. The letter requests $1 million be
appropriated to the CDC to develop a Federal COPD Action plan.

COPD is the 4th leading cause of death in the United States and an
estimated 24 million Americans have the disease. Currently CDC does not have any
funding to devote to prevention, surveillance and research into this disease.

Please work to ensure that at least $1 million is appropriated to CDC
this year for a COPD program and sign onto the Dear Colleague letter.
Thank you.
____________________________________________________________________
If you would like to email; you can find directions here:

http://www.emphysema.net/cdc_copd_program.htm

Please feel free to personalize and make changes.
If you have difficulty doing that, we would be glad to assist.

Send a request for help to me at lwatson@hvc.rr.com
Please remember to include your name, address, and zip + four and
telephone number.
We will be glad to help.
All information is confidential..
Thank you for your help.
The Executive Board &
Linda Watson lwatson@hvc.rr.com
Pres. EFFORTS”


Leg Veins Not Vain

Saturday, April 25th, 2009

Getting your lower leg veins checked is not vain and getting them checked free is a winner all the way around.
Lower leg ulcers are a condition when the skin opens in sores and yellow pus drains down the leg. It causes the worst pain I have encountered and in my case, it is chronic.
Swollen lower legs seem a common uneventful condition – do not ignore it as I did. Get your legs checked. If your doctor tells you to lay off salt and elevate your legs above your heart – do it. The future pain avoided is yours.
Pain pills are not an easy solution for a COPDer – they depress the respiratory system – the last thing we need.
Early detection and education is a key to healthy pain free legs
Today and the 4rth Saturday of every month the Kitsap Thoracic & Vascular clinic offers a FREE venous screening according to the Kitsap Sun’s latest jewel, “Better Healthy Living” magazine.
John S. Arthur M.D. F.A.C.S. is located on Wheaton Way #101, Bremerton. Dial 360-479-2400 or e-mail KTV101@msn.com for more information.
Harrison Medical Center touts two linear accelerators to fight cancer. It is a precision tool, image-guided radiation therapy…a tool developed through cancer research.
Someday COPD will have a research break-through. Someday.
In the meantime, a cheer for medical research and researchers for disease … research cuts through the ignorance barriers of disease.


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About This Blog

This is a patient to patient blog to exchange information and resources...from COPD (Chronic Obstructive Pulmonary Disease) to Arthritis to Cellulites to Sarcoidosis to Sleep Apnea to RLS to Psoriasis to Support Groups to Caregivers and all points in between. Written by Sharon O'Hara.

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