Press Release: Local Woman Fights Fatigue – One Post At A Time

I am sending out press releases to the local newspapers to help raise awareness for ME/CFS Awareness Day on May 12th.  I wanted to post a copy on here so that others can see how to write a press release so you too can help raise awareness in your city.  

PRESS RELEASE LOCAL WOMAN FIGHTS FATIGUE ONE POST AT A TIME

Chambersburg, PA A local Chambersburg woman dedicates what little bit of energy she has each year to help raise awareness for ME/CFS Chronic Fatigue Syndrome.  May 12th is CFS Awareness Day and Sandy Robinson, 40, has been living with this debilitating condition since the age of 21. 

CFS affects more than a million American adults and teens, yet too few people understand its serious and long-lasting effects. It is characterized by severe exhaustion, disabling problems with memory and concentration, widespread muscle and joint pain and persistent flu-like symptoms. Research has documented defects in the brain and many body systems and new studies from CDC and other scientists show abnormal gene activity in several key regulatory systems throughout the body, but we still don’t know what causes it or how to effectively treat it. The CDC has compared the level of disability caused by CFS to multiple sclerosis, end-stage renal failure and chronic obstructive pulmonary disease (COPD). There is no diagnostic test and treatment of the symptoms has limited effectiveness.

Sandy, like many CFS patients, can look back and determine when the illness first began.  At the age of 20, Sandy was diagnosed with mononucleosis, which is typically more severe in adults than it is in teens.  Sandy never fully recovered from the mono and after that her health continued to deteriorate.  Over the years Sandy has experienced many setbacks with her health and has been bedridden many times due to the severe symptoms and exhaustion caused by CFS. 

Like many CFS patients, Sandy had to continue to try and work regardless of how sick she would become.  Over the years, Sandy would work herself up to management positions only to have a major flare from her illness and then she would have to take time off, sometimes months, and had to slowly build back up her schedule to full-time. 

Sandy says she completely ruined her health when she became self-employed for a popular direct sales company.  While self-employed, Sandy had worked herself to the top 2% of the company and had earned a company car by her 2nd anniversary with the company.  But shortly after her promotion, Sandy had a major setback and was once again bedridden for months.  “I pushed myself hard to get to the top because that is what I have always done.  My body was constantly shutting down while I was working my way up but I would ignore it, push through, and would tell myself that I could rest once I reached the top.  But that never happened.  Once I was at the top, the hours became longer and I was back to working more hours than I ever worked when employed by someone else.  My body finally shut down completely and I had to go on disability.  That was the darkest time of my life.  I lost everything I had worked so hard for:  the car, the position, and the income.  The medical bills were piling up faster than we could keep up with and I couldn’t work at all.  I was severely depressed for a long time because I had always worked hard and enjoyed it.  I felt like I lost my identity when I couldn’t work anymore.”

Then when Sandy didn’t think things could get any worse, she developed two more chronic illnesses that are common in CFS patients:  Interstitial Cystitis and Fibromyalgia.  Robinson states, “Interstitial Cystitis is a severe bladder disease that causes excruciating pain in the lower abdomen and pelvic region and bladder hemorrhages.  It also causes pressure in the abdomen and vaginal area and it feels like being nine months pregnant all of the time. I was lying on the bed in the fetal position most of the time because the pain was so severe.  IC also causes frequent urination and I was going to the bathroom up to 60 times a day.  My mom had to come and stay with us for a while because I couldn’t take care of my son while my husband was working.  I couldn’t do anything. Between the exhaustion from CFS and the pain I was in, I felt like my life was over.”

Sandy says that her family has been a great support system and that if it weren’t for the love and support of her parents, husband and son, she would probably not be here today.  “I have always been a strong person but having a chronic illness as devastating as CFS has been extremely hard for me emotionially.  I try everyday to be thankful for what I can do and I try not to focus on what I can’t.  I also never give up hope for a cure.” 

In 2006, Sandy started a blog on CFS, Fibromyalgia and IC Disease to help deal with her depression and to cope with her feelings of not being able to work.  According to Sandy, “Fighting Fatigue (http://www.fightingfatigue.org) has become bigger than I ever thought it would.  It has not only helped me but I get several emails from readers who say that my website has saved them.  They say that they finally have someone they can relate to and who understands what they are going through.  They also discover that a lot of the symptoms that doctors tell them are in their heads are really real…because I have the same symptoms.”   

CFS is a complex illness that has to be diagnosed through exclusion of other illnesses.  Because there is not a test that can definitively diagnose CFS, there is a stigma surrounding CFS that the patients are just lazy or have emotional problems.  “But I know that is not true.  Over the years through my website I have talked to many CFS patients and most of us have one thing in common:  we are Type-A personalities; hard working and ambitious.  There have also been many studies that support that CFS is a physical disease and not a psychological one.” 

Sandy also faithfully donates money to the CFIDS Association of America, the largest and most active charitable organization dedicated to Chronic Fatigue Syndrome. 

In 2008, after Sandy’s son started school, she decided to try and go out and see if she could work again a few hours a week.  “My health started improving some in 2006 and by the time my son started school, I was pretty sure I could work a very restricted schedule.  I work about 8 12 hours a week at Giant Foods in Chambersburg and getting back out in the workforce has been good for me in many ways.  I don’t know how long I will be able to keep it up but I am going to work as long as I can.  I have a lot of setbacks with my health but I have learned how to listen to my body and I don’t push myself anymore.  If I feel a flare coming on, I rest.” 

“Every May I try to do something to help raise awareness for CFS and I try to educate people on the severity of the illness through my website.  All I can do is continue to fight fight for myself, and fight for a cure.”

If you would like to make a donation to the CFIDS Association, please check out their website at http://www.cfids.org.  To visit Sandy’s blog, go to http://www.fightingfatigue.org.

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