Her name is Robin Faith F. Medrano.  She is my youngest daughter who had cardiomyopathy and went to heaven May 9, 2006. I don't want to write the word "died" because for me, it has a negative connotation.  I think I still cannot accept the fact of her being gone.

But before this happened, let me tell you a triumphant story of her life.......

When I was pregnant with her, she was already found to have an enlarged heart.  I was confused and bothered during my pregnancy because I promised myself to become a better responsible pregnant mom for my baby.  It's not that I was not a responsible pregnant mom with my first daughter Maia Frances, but I was 22 yrs. old and didn't know what to do.

My pregnancy with Maia was absolute spoiling - eating big mac, large coke, and large french fries.  Big mac meal (upgraded) was my favorite.  I seldom drank milk because in the first place, I wasn't fond of drinking milk.  There were a lot of things that I realized that I should've done during my first pregnancy.

I had a normal delivery with Maia but I was oh so fat.  She was 6.9 lbs and everybody was so excited because she was the first grandchild.  It was the first time that really led me to feel that I was complete as a woman.

My second pregnancy with Robin, I ate healthy foods, drank milk, took my vitamins, and did the best that I can to make sure that she comes out in good and healthy condition.

In my 6th month of pregnancy with Robin, Dr. Sycelia Gue (my OB-GYNE) did an ultrasound and there, she discovered that my baby's heart was enlarged.  She asked so many things about me taking pills, medications, and having measles during my first trimester.  None of these occurred and I never took any medications aside from paracetamol which was safe.

To make my story a little bit shorter (and I would post mine as another blog), during my pregnancy, I was diagnosed to have SLE (Systemic Lupus Erythematosus).  This is the reason why Robin had an enlarged heart.  Her development in my tummy wasn't well because in the first place, I wasn't well.  My system has gone crazy!

We were adviced by Dr. Lumicao (Robin's pedia-cardiologist) that after I deliver Robin, we should provide her with a pacemaker.  Well, so much for that, we couldn't afford a pacemaker for her since I was to deliver in cesarean section and we are to prepare P60,000.00 for my delivery.  A pacemaker would cost P300,000 - P500,000 and we cannot afford that amount.

Dr. Lumicao advised us to try and apply for a pacemaker in the GIFT OF LIFE foundation.  Nine days after my delivery, Dennis (my hubby) went to Bohol.  This is an island in Visayas and he had to take a boat to go there.

In Bohol, Dennis met Ms Fancy Baluyot who was the National Red Cross Chairperson.  She was an elderly woman whom you could par with Imelda Marcos because she was so elegant.  Most of them would say she was strict, but I think she just wants to get things done properly.  Dennis submitted all the requirements and came back home.

Before her pacemaker implant, Robin wasn't so sickly but she was already maintaining her captopril, aspirin and lasix.  I made sure that she would go to her checkups and making sure for myself that she really took her medications.  She was chubby and drank lots of milk - I mean lots.

I was so happy because I didn't see her to be sickly but was a happy and healthy looking child.

The news came when Dennis got a call from the GIFT OF LIFE in his office.  He was astounded and felt like he won a lottery upon hearing that Robin was chosen among all thousands of applicants around the world to be given a pacemaker and will be implanted in New York - just the best city in whole universe.

I cannot explain my feelings upon getting the news.  I was happy and I was sad because only Dennis can accompany Robin.  They would be traveling halfway around the globe with Me and Maia left behind.  But I can make sacrifices for Robin.  Just as long that she will be well and okay.

Three months without my baby terribly crushed my heart.  All I was thinking then was it's all for her.  That I need to forget myself missing her.  This will be for her own good.

District 7230 Gift of Life, Inc. sponsored Robin's pacemaker - Kappa 700 DR.  She was implanted on February 26, 2004 at the Westchester Children's Hospital, New York.

I sincerely would like to thank Ms Fancy Baluyot for helping us facilitate our documents, Mr. Dan Nalven who was the Rotary president at that time, our host couple who welcomed Dennis and Robin in their home for three months, Mr. and Mrs. Luis Del Rosario.  They have been so sweet to Robin and we will treasure the love that they have given her.

To all the members of the District 7230 Gift of Life, Inc., we will never forget your unending help to those who are in need.

Follow the link below and you will find our dear sweet Robin.  The date November 27, 2003 was maybe mistaken in their records or maybe this was the date of their approval of the documents.

http://giftoflife7230.org/our_little_guests.htm

You can also try to even browse through this link if you know children out there with heart problems who might also need the help of the Gift of Life.

MISSION STATEMENT of the Rotary Gift of Life, Inc.

The Mission of Gift of Life, Inc. is to further the cause of world peace and understanding by facilitating free medical services to children suffering from heart disease and other similar or allied diseases, regardless of race, creed or national origin, and who would otherwise lack access to such services.

Our district's Gift of Life project is provided on a totally volunteer basis by cardiologists, surgeons, nurses and other dedicated members of the Maria Fareri Children's Hospital of Westchester Medical Center in Valhalla, and  Montefiore Children's Hospital Bronx, NY.

For further information on the Rotary Gift of Life Inc. and how you can be part of it, e-mail us at: info@giftoflife7230.org or call/fax to: (941) 631-7764.

Lisa Datcher is hoping to add lupus to that list. Datcher, an Upper Marlboro resident, was diagnosed with Systemic Lupus Erythematosus, or lupus, in 1992. Since that time she has made attempts to promote lupus awareness.

"I have made attempts to promote lupus awareness locally and nationally because still in 2008 there are many people who have never heard of this devastating disease; a disease that affects an estimated 1.5 million Americans where 90 percent are women," Datcher said.

Although I had heard of the disease, I was not sure what it was all about or how you knew if you had it. According to the Web site for The Lupus Foundation of America, lupus is a chronic, potentially devastating autoimmune disease in which the immune system turns against the body's own cells and tissues, causing inflammation and tissue damage. Because it is not easy to diagnose, lupus is called the "great imitator."

According to the National Institutes of Health, lupus is also three times more common among African-American women than Caucasian women and is also more common than in women of Hispanic, Asian and Native American descent. Incidence is also greater among Hispanic, Asian and Native American women.

There is also no single diagnostic test for lupus. Datcher said that it took four months for a definitive answer to her illness. Misdiagnosed with arthritis and multiple sclerosis it was not until she had a screening test call an anti-nuclear antibody test that she was diagnosed with lupus.

Datcher says she has not let the disease take over her life. She formed an online support group for others to connect and support one another. Datcher will also participate in the "Walk With Us To Cure Lupus Walkathon," to be held at 10 a.m. Nov. 2 at the National Mall, Capitol Reflecting Pool.

Datcher said that it is critical that adequate funding is available for continued research so that a cure can be found and is appealing for donations for research by registering to walk or by making a donation to the Alliance for Lupus Research.

Sisters Saving Sisters is supporting this Walk and this Cause and we ask you to help us.

If you would like to make a donation, please visit the site and make it online:
Team Lisa-Giving the Boot to the Lupe.” http://walk.lupusresearch.org/site/TR?fr_id=1950&pg=teamlist

You can either join the team or click on Charlene Brown to Sponsor The Black Business Cafe and Sisters Saving Sisters.  We pledged $2000.00

How To Get Started

• Discuss exercise plans with your doctor.
• Start with supervision from a trainer.
• Apply heat to sore joints to start exercise program.
• Stretch and warm up with range-of-motion exercises.
• Start strengthening exercises slowly with small weights Progress slowly.
• Use cold packs after exercising.
• Add aerobic exercise.
• Consider appropriate recreational exercise.
• Ease off if joints become painful, inflamed, or red, and work with your doctor to find the cause and eliminate it.
• Choose the exercise program you enjoy most and make it a part of your lifestyle.
People with arthritis should work with their fitness trainer to adjust their exercise program when they notice any of the following signs of strenuous exercise:
• Unusual or persistent fatigue
• Increased weakness
• Decreased range of motion
• Increased joint swelling
• Continuing pain (pain that lasts more than 1 hour after exercising)
Most important is to use caution. ‘Too much, too fast, too soon’ is not always the best policy. Just remember that you are not competing with anyone but yourself. Hence always work at your own pace & listen to your body.

If you haven't already stopped by the Lupus Foundation of America's website to join (you can even be an e-advocate if you're unable to travel), stop by today and see what they have to offer.

We want to continue to get the word out, especially information written by people who have Lupus, or from their friends, family and caretakers.  If you'd like to contribute to the site or simply share your stories, feel free to do so.

Submit articles that you would like to share to info@lupus4you.com. 

Share your stories right here in the blog on our Personal Stories forum.   

Thanks for visiting!

Charlotte Gerber, Lupus "survivor"

The first is a study from Hoffman and Dukes in Connecticut, USA, e-published ahead of print in the International journal of clinical practice. They carried out a review of 37 studies of FM that measured health status with the 36-item Medical Outcomes Study Short-Form Health Survey (SF-36) or the 12-item Short-Form Health Survey (SF-12), describing how the health status profile of people with fibromyalgia compares to that of people in the general population and patients with other health conditions.

They found that studies performed worldwide showed that people with Fibromyalgia were significantly more impaired than people in the general population in terms of all of the eight health factors assessed. These factors include:

1. physical functioning
2. role functioning difficulties caused by physical problems
3. bodily pain
4. general health
5. vitality (energy vs. fatigue)
6. social functioning
7. role functioning difficulties caused by emotional problems and mental health.

FM groups had both mental health and physical health scores below the general population and poorer overall health status compared to those with other specific pain conditions. FM groups had similar or significantly lower (poorer) physical and mental health status scores compared to those with rheumatoid arthritis, osteoarthritis, osteoporosis, systemic lupus erythematosus, myofacial pain syndrome, primary Sjögren's syndrome and others.

The authors concluded that people with FM had an overall health status burden greater than that of people with other specific pain conditions that are widely accepted as impairing.

The second article, from researchers (Perruccio, Power, Badley) at the Toronto Western Research Institute, was published in the Journal of epidemiology and community health. Their study examined the relative impact of 13 chronic conditions using 3 outcome measures: activity limitations, self-rated health and physician visits.

They found that, at the individual level, fibromyalgia/chronic fatigue syndrome and cancer (and to a lesser extent stroke and heart disease) were associated with an increased risk of both activity limitations and a self-rated health status of fair or poor (as opposed to good).

Barcelona, Spain, Thursday 14 June 2007: 36% of patients with refractory systemic lupus erythematosus (SLE or lupus) remain well after undergoing B-cell depletion therapy (BCDT) without needing further standard immunosuppressive agents, according to a study presented today at EULAR 2007, the Annual European Congress of Rheumatology in Barcelona, Spain.

Overactive B-cells are commonly found in patients with SLE and reducing the number of B-cells in the system by BCDT has been suggested as a promising therapy for SLE patients who are unresponsive to other treatments.

In this study, initiated in 2000, patients with refractory SLE were treated with BCDT (based on rituximab) using a combination protocol with cyclophosphamide and steroids. Of the 33 patients who had a minimum of 6 months follow-up duration at the time of analysis (mean duration 37 months, range 6-79), 12 patients remained well. Median duration of B-cell depletion was 4 months (range 2-15), with 2 patients remaining depleted at time of analysis (73 and 8 months respectively). B-cell depletion was beneficial clinically, with a decrease of median global BILAG scores (clinical activity index – see Editors note) from 13 to 5 when measured between 5 and 8 months pGlobal Health Vision

Source

Bila: 25 Mei-3 Jun
Masa: 10 pagi-10 malam
Tempat: Danga Bay, Johor Bahru

Pameran orkid terbesar di rantau ini menarik penyertaan 27 perwakilan daripada 20 negara termasuk negara-negara Asean, Jepun, China dan sejauh New Zealand, Australia, Afrika Selatan dan dari Eropah.

Sehingga 800 jenis orkid bakal dipamerkan di pameran ini yang bermula esok - bertepatan dengan reputasi Johor sebagai pengeluar orkid terbesar di Malaysia. Pameran ini dijangka menarik 300,000 ribu pengunjung.

ESOK PERLANCARAN CITRAWARNA ('COLOURS OF MALAYSIA) 2007.  

Bila: 26 Mei-10 Jun
Masa: 8.30 malam
Tempat: Dataran Putrajaya 

Antara acara yang akan diadakan ialah perarakan kereta berhias, kebudayaan kaum dimalaysia dan pertunjukan bunga api. Ia akan dilancarkan oleh Perdana Menteri Datuk Seri Abdullah Ahmad Badawi. Komplek membeli belah seperti Alamanda, Sg.Wang, Bukit Bintang Plaza, Suria KLCC, Midvalley, Central Market, Menara KL, Saloma Bistro dan Taman Warisan Pertanian Putrajaya akan juga mengadakan pesta makanan, persembahan budaya dan jualan kraft .

LUSA 'WALK-A-PAYUNG , WALKATHON UNTUK PESAKIT LUPUS (SLE)

Systemic lupus erythematosus
D'Cruz DP, Khamashta MA, Hughes

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Cochrane Reviews:

Cyclophosphamide versus methylprednisolone for treating neuropsychiatric involvement in systemic lupus erythematosus

Treatment for lupus nephritis

Dehydroepiandrosterone for systemic lupus erythematosus

Herbal medicines for systemic lupus erythematosus

BMJ