November 2017

Eyewitness to Destruction: Bill Patsakos in Puerto Rico

Bill Patsakos: Firefighter and father with heart

We’ve had only a few members of the hemophilia community visit Puerto Rico in the wake of
Hurricane Maria on September 20; this report is from Bill Patsakos, who was first from our community to visit from the mainland US. He is uniquely qualified to serve: he is an Army Veteran Medical Service Corp officer, a CVS Pharmacist and FDNY Lieutenant. He is also serving with FEMA, and is the father of three boys with hemophilia. Bill did not
hesitate to travel to devastated San Juan—he has family there too— and meet with Dr. Enid Rivera, pediatric hematologist and chair of hematology, at Hospital Universitario, an HTC
that serves hundreds of bleeding disorder patients. Bill is calm, efficient and deeply caring for his fellow Americans trapped in the aftermath
 Bill shares his eyewitness report with us: “Hurricane Maria, a powerful Category 4 hurricane with wind in excess of 150 mph ripped through Puerto Rico, drenching the island with feet of rain and devastating wind and storm
surge. The entire island endured power outages, complete loss of communications and no running water. The Governor Ricardo Rossello said, “Make no mistake; this is a humanitarian disaster involving 3.4 million US citizens.” San Juan mayor Carmen Yulin Cruz pleaded, “Help us! Without a robust and consistent help we will die.” [She has since claimed that about 900 have died, far beyond the official death toll of 51 lives as of October 20]. Many more are at risk due to disease, lack of infrastructure and access to basic necessities and medical care and medicines. 

Destroyed road

“The focus has been initially to restore power and communication capabilities to critical
facilities, firehouses, police stations and hospitals. I’ve been able to assist and coordinate medical shipments to four strategic pods located around the island and link up with medical volunteers to triage and deliver care to rural areas that are heavily affected. We’ve been able to visit patients that doctors were concerned about and deliver medications. To date we were able to collect medical supplies, surgical supplies and over the counter meds and approximately $350,000 in factor product and along with injectable drugs, refrigeration and storage. We’ve been able to assist major distributors and pharmacies in gaining assistance from FEMA for fuel and delivery logistics. We’ve communicated needs to volunteer organizations in obtaining tarps for temporary roofing and in some cases place some on roofs of residents. We have visited many hospitals and in particular Centro Medico and the medical school SJU which is the major medical institution on the island.


“There are approximately 100 patients with hemophilia and another 150 with von Willebrand disease. Click here to make a donation to help families with bleeding disorders in Puerto Rico! [Bill met with several patients to assess their needs.] “There’s Osman, a beautiful ten-month-old baby boy with hemophilia A. Maria Rodriguez Diaz, his mom, only 21, also experiences bleeds but was not diagnosed. “Osman has a newborn baby sister, who also has a bleeding disorder. Maria had to stop working as a security guard since she is frequently taking

Home ruined by Hurricane Maria

her kids to doctor’s appointments. The children’s father is currently working daily 12-hour shifts
as a security guard.  During the hurricane their house was completely soaked since some of their windows didn’t resist the strong winds.  All their furniture, clothes, and babies’ articles were damaged. Three weeks after the hurricane they only have water a couple of hours a day, mostly at night, and no electric power. Maria has been struggling to find access to the medication Amicar, since the pharmacies contracted with Medicaid didn’t have it available. She was very thankful that she would receive it as part of donations to the Pediatric Hospital. It’s sad how Maria says she’s ok while everything is going so badly for them.

 “We also met Joanne, a 20-year-old woman who was diagnosed with severe factor 5 deficiency (a prevalence of about one in a million). We listened to her story as she was being infused with factor. She lived with her stepmother, aunt, uncle and grandma in Ponce.  They were all evacuated from their home the day before the hurricane, since the house is near the beach. They lived in a refuge center for five days until they were able to return to their home.  When they arrived, what they knew as their home was no more. Their house was flooded, the floor on
top of theirs, where Joanne’s cousin lived with his family, was completely destroyed. So now there are eight members of the family staying in a space of a living room/bedroom with only two beds, no water and no electric power.  Joanne sleeps in one bed with her grandmother
(an open heart surgery patient, insulin dependent diabetic with asthma). They have a very small generator to keep the insulin cool, but with the gas shortage, they have to wake at 4 am to get in line to buy gas.  It has been very difficult for them to be able to purchase drinking water and in their area there is almost no food available in stores. She tried to smile but she seemed very sad and hopeless.

Destroyed patient home on beach

 “We then traveled to see Victoria Pereira, a patient who left the Island and is currently receiving help from HFA through their Helping Hands program on the mainland. As we arrived to her address, we sadly saw that the house was completely destroyed. “The people
of Puerto Rico are strong and resilient with tremendous dignity—they are Americans forced to live in third world conditions. We must work to restore Puerto Rico’s infrastructure while
simultaneously assisting their economy and jobs or else the island will face a mass exodus to the continental U.S. To date, 40,000 people have moved to the mainland US since Maria has struck. Please donate your time and money!” Click here to make a donation to help families with hemophilia in Puerto Rico through HFA, a reputable organization that will make a direct donation to the families!

Bill Patsakos with Dr. Enid Rivera and HTC Team

Puerto Rico: Soy Carlinette

Lily Gomez bringing supplies to Carlinette

Puerto Rico continues to struggle from the ruins of Hurricane Maria, which struck the island on September 20. The hemophilia community is blessed to have incredible volunteers like Liliana Gomez of Florida, and Bill Patsakos of New York, both parents of children with hemophilia, who have been to Puerto Rico at least twice (Lily is there right now) to gather information on the families affected, and to bring supplies. They’ve also been instrumental in helping us to form a plan on how to get funding to these families, like Carlinette.

Carlinette Aquino Monserrate is the mother of Yensen Yahir Garcia-Aquino, age 7, and Kyanzel Derich Alicea-Aquino, age  22 months. Carlinette, a single mom, endured the hurricane alone with her two children. 
“The hurricane winds were very strong and loud, and my children were all very scared,” she told Lily. “Water kept coming in through all the windows and through the roof for many long, eternal hours. I kept peeking through the window. It was horrifying to see as the wind would actually lift up the car! I was so scared that the wind would flip it or throw it against the house.”
Carlinette says she will never forget the loud crashing noises against the house from all the flying debris. “It was a nightmare, but we feel blessed to be alive.”Like most families, she lost most of her furniture and the leaking roof has ruined the few items she had left. “I worry day to day about getting milk for the kids,” she shared. “It’s very hard to find ice.” Carlinette is struggling without a job and just trying to manage this situation. “I know I’m not alone and want to thank you for remembering us and coming out here to help us. We continue to be blessed with your help, our treatment center and the help we now know is coming to us through the foundation and our own community.” 

How can you help families like Carlinette’s? Hemophilia Federation of America, in conjunction with NHF, Coalition of Hemophilia B, Hemophilia Alliance and many others, have jointly developed an excellent plan to gather funds from our community, and then distribute funds directly to families through HFA’s disaster relief fund, in a campaign called Together We Care. This program ensures that funds will be used to rebuild homes and provide emergency assistance. All donations will be tracked, and the success stories will be documented and shared in the near future. Please consider donating and visit here for more information!

A very happy family

 Hemophilia Federation of America, in conjunction with NHF, Coalition of Hemophilia B, Hemophilia Alliance and many others, have jointly developed an excellent plan to gather funds from our community, and then distribute funds directly to families through HFA’s disaster relief fund, in a campaign called Together We Care. This program ensures that funds will be used to rebuild homes and provide emergency assistance. All donations will be tracked, and the success stories will be documented and shared in the near future. Please consider donating and visit here for more information!


Puerto Rico: Soy Radames

Lily Gomez delivering supplies to the family
Meet Radames Castillo-Toa, and parents Auraliz Martinez and Francisco Castillo. Real Americans with hemophilia who suffered catastrophic loss when Hurricane Maria struck Puerto Rico on September 20. Lily Gomez, a mother of a child with hemophilia who lives in Miami, visited the island to assess damage, meet families and return with a report and recommendations for aid.
Lily shares that the oldest son Radames described the hurricane landfall  as terrible. “Everything was flying around outside, and then inside our home we lost the roof. It was a long day.”
The father, Francisco, indicated that the family lost everything when part of the roof flew away, because everything got wet and the walls cracked.  They had to evacuate and go to his mother-in law’s home and try to wait for FEMA there.  In the aftermath, Francisco tried to cover the roof but the panels and the tarp he got are not enough.
“When it rains outside, it rains inside,” he commented. He added that an electrical pole flew away with the wind, leaving the family in the dark.  Fortunately, he was able to borrow a
generator to keep the factor refrigerated. They are back at the house now, but are in desperate need of a new roof. Each time it rains, everything gets wet again.

Lily said, “We found them retrieving water from a spring coming out through a PVC pipe on the side of the mountain.  He said he doesn’t know where the water is coming from but that’s the only water they have available for bathing, washing and toilets.  They boil the water when they need drinking water. He said he knows about the problems with contaminated water.  He said his wife leaves early in the morning to find drinking water.”

Communication is almost impossible, as there is barely any signal.  The family submitted a request to FEMA for a roof, but FEMA is overwhelmed too. The family is still waiting.  The father told Lily, “Thank God we are alive and working together to meet our needs.”

What to do? I am on the phone weekly with Kimberly Haugstad, executive director of HFA, wonder woman and also mother of a child with hemophilia. Hemophilia Federation of America has a disaster relief program, the only one of its kind for Americans with hemophilia, and probably this week we will confirm a plan to get funds to Radames and his family for a new roof. Imagine if your home looked like the photos below. Americans need to help Americans now, and our hemophilia community needs to start giving. During this month of Thanksgiving, it’s the right thing to do.






Remembering Renée

Laurie Kelley and Renée Paper, 2002

This past week I’ve been working diligently on updating my book, A Guide to Living with von Willebrand Disease. I feel guilty saying it’s my book—it was actually “our” book, my and Renée Paper’s. It’s been out of print a while, and we truly need this resource. While thinking of Renée as I edited it, I realized that tomorrow marks the 10th anniversary of her passing, and working on this book made me realize again what a valuable leader, friend and advocate she was.

She was only 49 when she died, after an eight-week hospital stay following a fall. She had dealt with multiple health challenges: von Willebrand disease, diabetes, hepatitis C. Compounding this was obesity. After she lost her sister Michelle, who suffered from similar health concerns, she decided to have gastric bypass surgery, in an attempt to improve her health. She lost a remarkable amount of weight, but the years of illness had taken their toll on her body. What’s truly amazing is that nothing, nothing, seemed to slow Renée down!

She traveled and lectured frequently. She was a powerhouse when lecturing. I saw her absolutely command a room full of nurses and doctors with her photographic memory, brilliant knowledge of VWD and her deep-seated passion. She spoke with authority, compassion and a call to arms, for everyone to find unidentified VWD patients, get them the treatment they deserve and need, to stop the silent suffering of women. She herself had had a hysterectomy in her early 20s, rendering her unable to have children, when doctors did not correctly diagnose her with VWD and sought to end her uncontrollable bleeding. I think in part her burning dedication and fiery style of lecturing was fueled by the embers of what was left of her ability to control her life, to have children. She didn’t want this to happen to any other woman.

Fiery style of lecturing? If you never heard a Renée Paper speech, you missed some great and shocking speeches. One of my favorite lines by her was when she blamed the medical community for misdiagnosing women who had VWD as being “hysterical,” or “imagining” their illnesses. “You know why this happens?” she would bark out. “Because men dominate the medical scene! And you know why they don’t take us seriously? Because men don’t have uteri!” Leave it to Renée to always use the correct Latin plural of uterus.

 Renée traveled with me to Puerto Rico and the Dominican Republic on business together, and she and I presented in places as close as Connecticut and far away as Australia. She was brilliant; she was fun-loving. She was could be irreverent yet compassionate. She loved animals, and one of her favorite gifts to her friends was to send a photo of herself each New Year’s with a different animal from different parts of the world: kissing a dolphin in the Caribbean; draping a boa constrictor around her neck in Mexico; nuzzling an alligator in New Orleans; atop a camel in the Canary Islands. Renée knew how to grab life by the horns and tame it, and she wanted others to do that, too, regardless if they had a disorder or disability.

 Renée walked the talk: her message was always to get educated about VWD. Don’t let it keep you from enjoying life. Play the hand you were dealt. (Yes, she was from the Las Vegas area!) Play it and win.
Renée was a visionary leader. As an emergency room nurse in Nevada, she saw the need for a patient-based hemophilia organization and an HTC. Nevada had neither when she first lived there. Typical of Renée, she saw the need and figured out how to meet it. She founded Nevada’s first patient organization and HTC, both of which continue to this day. In fact, November 1 is Renée Paper Day in Nevada! How many people can claim such an honor?

 So we remember an inspiring and action-oriented leader, who was warm and loving, and also at times, a pain! And she knew it, and didn’t care. She had places to go and things to do, and a higher calling. As if she knew the clock was ticking, she made incredible accomplishments that continue to benefit patients to this day—including the world’s first book on VWD, which will be re-released in 2018. A legacy like that is the mark of a true leader.

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