A Great-Grandfather’s Death Certificate Lead to my HHT Diagnosis
The family picture (from left to right) is of my grandmother (Sue Grimmett), grandfather (Harold Grimmett), father (Allen Grimmett), and me.
Katie Grimmett- a Junction City, Ark. resident shares her family's struggle with HHT
My great-grandfather, Benjiman Grimmett, struggled with bleeding problems all of his life. However, bleeding was not an abnormal occurrence to my great-grandfather. Benjiman’s mother also suffered from horrible nosebleeds, and bleeding was a normal thing in the Grimmett family. Even though my great-grandfather suffered from nosebleeds all of his life, as he became older his bleeding worsened. By the time he reached his seventies he began to require blood transfusions. His bleeding became worse and worse, and in 1974, at the age of 79, he passed away from the consequences of internal bleeding. My grandfather and father also inherited this bleeding condition and continued to live with the annoying daily nosebleeds.
In 1990, I was born, and the doctors soon discovered that something was terribly wrong. I was blind. After an examination, an ophthalmologist determined that I had been born without optic nerves and declared that I would never see. My parents did all they could for me and implored their family and friends to pray. After weeks of praying and waiting, one day my father came in to our living room and noticed that for the first time I looked up at him and followed him across the room with my eyes. My parents took me to the doctor, and the pediatric ophthalmologist fell down on his knees to thank God for doing what neither he nor any other physician could do. From that point on, I continued to grow into a healthy young girl, except for one thing: I began to get the family nosebleeds. I required cauterization of my nose from time to time and dealt with the bleeds as they came along. However, in December of 1999, I had an experience my family and I will never forget. During the night of December 8th, my parents heard me coughing, and my mother came to check on me. She found me lying in a pool of blood, and I was rushed to the emergency room. The ENT performed surgery and stopped the bleeding from my throat. After a couple of days in the hospital I was released to come home. However, exactly two weeks later, I had another attack which was worse than the first. This time I had lost so much blood that I had gone into shock. I was given a blood transfusion, and the doctor performed surgery on my throat once again. At this time, my family realized that the inherited bleeding condition was more than just an annoying nosebleed problem. Soon afterwards, my grandmother found my great-grandfather’s death certificate and discovered the name of this strange condition, Osler Weber Rendu Syndrome.
Osler Weber Rendu Syndrome, or Hereditary Hemorrhagic Telangiectasia as it is now commonly referred to, is an inherited bleeding disorder which affects approximately 1 in 5,000 people. HHT affects the nose, skin, lungs, brain, liver, spine, and other organs. Its main consequence is nosebleeds. However, HHT can also cause telangiectasias (small spots which burst open and bleed) on the skin or on the major organs. Spots on the organs are referred to as arteriovenous malformations and can cause serious damage, such as stroke or brain abscess, if left untreated. HHT affects men and women equally, and affected individuals have a 50% chance of passing the disorder to their children. With this knowledge, my family now had the power to fight this rare condition.
After my throat surgery, I had a CT scan to check for AVMs on my lungs. The test showed that I had two malformations, and I was sent to the nearest HHT treatment center at the time, which was in Salt Lake City, Utah. While in Utah, I had coils put on my lungs to fix the AVMs, and in 2011, I had the same procedure at the newly opened HHT Treatment Center in Dallas, Texas. I now have ten coils and a plug in both of my lungs. I require follow-ups every few years to check for new AVMs. In addition to the lung scans, I had a MRI of my brain in August of 2012. The MRI revealed that I have a small AVM. The test also showed something interesting. Part of my brain did not develop. The doctor at the HHT Center in Little Rock has concluded that the brain AVM caused me to have a stroke while in my mother’s womb, and, thereby, a portion of my brain did not develop. We now know why I was born without eyesight. This discovery has been the most recent part of my journey with HHT, and this disorder continues to have an impact on my family.
The greatest inspiration in my life has always been my grandfather, Harold Grimmett. He battled nosebleeds from a young age, and as he aged his bleeding became continually worse and at times he required blood transfusions. However, in spite of all of his bleeding, he had a zeal for life and a great love for his family. He always wanted to know how I was doing and how my bleeding was. My grandfather never focused on himself. Instead, he desired to help and be a friend to everyone around him. Unfortunately, we lost my grandfather in October of 2011 due to a stroke. The exact causes of the stroke will never be known, but one thing is sure, no one will ever take his place and HHT has caused too many tragedies in my own family and in countless other lives. For this reason, I am on a mission to spread the word about HHT and encourage people to give blood for those who suffer. Education is power, and it is my desire that through my efforts others will be saved from tragedies and will get diagnosed and treated before it is too late.
Be part of Cancer Research Today for a Cancer-Free Tomorrow!
Cancer is a word heard too often here at LifeShare Blood Centers and in our community. That is why we are fighting back against this disease with the American Cancer Society by encouraging you to consider taking part in the Cancer Prevention Study-3 (CPS-3).
Knowing the importance of cancer research, LifeShare has agreed to be a promotional partner for the study in the North Louisiana area. We are extending this message to encourage everyone in the area to be a Community Champion and/or enroll in the study.
The ultimate goal of CPS-3 is to enroll men and women from various racial/ethnic backgrounds from across the U.S. to participate in a study that will help researches better understand the lifestyle, environmental and genetic factors that cause or prevent cancer and will save lives.
American Cancer Society studies began in the 1950s and involved hundreds of thousands of volunteer participants. These studies have led to discoveries such as the link between cigarette smoking and lung cancer and the role obesity plays in the risk of several cancers. The new CPS-3 will help researchers build on evidence from previous studies, and help bring us closer to eliminating cancer as a major health burden for this and future generations.
To enroll in the study you must be between the ages of 30 and 65 and have never been diagnosed with cancer. Enrollment will be available during the week of July 23 – 27 at these community
Participating is easy and involves the following steps:
• Visit www.cps3northla.org to schedule your appointment. Appointments will take place during July 23-27.
• After scheduling your appointment, you will receive a confirmation email with instructions to go online and complete the comprehensive survey which will ask for detailed information on lifestyle, behavioral, and other factors related to health.
• At your appointment, you will be asked to sign an informed consent form, complete a short survey, and provide a waist measure and a small blood sample (similar to a doctor’s visit). The blood sample will be taken by a certified, trained phlebotomist.
• At home, you will be asked to complete mailed surveys every few years over the next 20-30 years to update lifestyle, medical, and behavioral information.
Your appointment should last 20-30 minutes. Completing the comprehensive survey online prior to your appointment will take approximately 45-60 minutes. All personal information and any individual results of blood analyses that may be performed will be kept strictly confidential by CPS-3 research staff. There will be no cost to you to participate.
If you don’t meet the eligibility requirements, your significant participation comes from telling everyone you know about this opportunity. Anyone can become a Community Champion by registering online and helping others sign up for the study.
For more information about CPS-3, please visit cancer.org/cps3, email
or call toll-free 1.888.604.5888. Remember, you can schedule your appointment today at www.cps3northla.org.
This is our chance to fight back against a disease that takes too much. I hope you will take part in this historic study and share this message with all those you know who want to join in this fight.
Blood Makes a Difference
Dantrell K. Howard was first diagnosed with Sickle Cell Anemia at 8 years old by her sister who was going to school during that time to become a phlebotomist. “We always wondered why I would get so lethargic as a kid. I would get real bad stomach aches and fever,” says Dantrell. After being diagnosed, Dantrell began receiving treatment at LSU Medical Center in Shreveport; LifeShare, through local donors, is the exclusive supplier of blood to LSUMC – Shreveport. Blood and exchange transfusions help Dantrell manage this disease and improve her quality of life. “After receiving blood,” Dantrell says, “I’m ready to do whatever. I have so much energy.”
For those that aren’t familiar with Sickle Cell Disease, it is a genetic disorder that affects the red blood cells, which use a protein called hemoglobin to transport oxygen from the lungs to the rest of the body. Normally, red blood cells are round and flexible so they can travel freely through narrow blood vessels. Patients with this disease have sickle-shaped red blood cells which often get stuck in blood vessels; this can cause episodes of pain called “Sickle crisies,” delayed growth, strokes, jaundice and more.
Dantrell, 38 years old now, has had to deal with some of these effects herself. She had to have an artificial hip put in because of Avascular Necrosis, a disease where bone tissue dies due to a lack of blood supply, common in Sickle Cell patients. A minor stroke has also caused her to lose some feeling in her face.
“Blood for this disease is very important. There’s so much pain that comes with this disease. If you don’t have the blood, you can’t get rid of the pain,” says Dantrell. Of the 10 blood transfusions and 3 exchange transfusions that Dantrell has gone through, she has used approximately 45 pints of blood. Because multiple transfusions have created the need for very specialized matching of the blood donor, she had to wait two weeks for her last transfusion because there were no donors available. “It’s often very hard when waiting on the blood for my surgeries and transfusions,” she says.
Watching Dantrell fight through this disease has caused her husband and many of her family members to become regular blood donors. “I just want to encourage people to give,” says Dantrell, “because the blood does make a difference.”
In the United States, Sickle Cell Disease most commonly affects African-Americans. About 1 out of every 500 African-American babies born in the United States has this disease. Additionally, because they are transfused so often, many Sickle Cell patients produce antibodies against red blood cells which are unlike their own. Once these antibodies are produced, the patient must receive blood specifically typed, or antigen-matched, to prevent a reaction with antibodies present. When attempting to find antigen-matched blood, the odds are often significantly increased by screening donors of the same ethnicity as the patient. In some cases, matched blood is almost impossible to find in donors of another race. Therefore, with some Sickle Cell patients, the rare blood types they need are only found in African-Americans. This is why it is important to Sickle Cell patients for the African-American population to donate blood. By becoming a regular blood donor, you are helping ensure those like Dantrell who depend on antigen-matched, blood will not have to wait for it- especially when there are plenty of us in the community who can provide it.
In Honor and Memory of I. Sackman "Sack" Marx
July 3, 1920 - March 26, 2013
Serving his country and community throughout his life, LifeShare Blood Centers honors I. Sackman “Sack” Marx.
A decorated war hero, pilot and World War II concentration camp survivor, Mr. Marx became a regular blood donor in the 1940s as a result of his own life being saved. He continued to give much of himself and his resources to support the community’s blood center through 2012.
As president of the steering committee garnering community support and financial contributions, Mr. Marx was instrumental in opening the Monroe location of the Louisiana Blood Center, now LifeShare Blood Centers, in 1979. Later, he spearheaded a successful capital campaign to relocate and expand Monroe’s blood center facility to meet the growing needs of blood products and services to the medical facilities of northeast Louisiana and south Arkansas.
In honor of Mr. Marx’s service to LifeShare a scholarship fund was established in 1983 with the seed money raised to bring a local independent community blood center to
Mr. Marx served as a volunteer member of the Board of Trustees and a charter member of the Monroe Civic Advisory Council for LifeShare Blood Centers and was honored with the LifeShare Blood Centers Lifetime Achievement Award in 2004 in recognition of his many generous contributions.
We, at LifeShare Blood Centers, will never forget I. Sackman “Sack” Marx for his service to our country and to the communities and patients we serve.
In Honor and Memory of Marvin H. Easley
Dec. 13, 1948 - Feb. 9, 2013
The unexpected news of Marvin Easley’s passing brings with it a combination of sorrowful thoughts and grateful memories at LifeShare Blood Centers. An accomplished professional, Mr. Easley shared his talents with LifeShare Blood Centers through countless hours of volunteer service.
Serving as a member of the Board of Trustees since 1979, the year the Alexandria center was opened; Mr. Easley devoted countless hours to projects that contributed to the organization’s growth into 79 parishes and counties throughout a three-state area.
At LifeShare Blood Centers, we maintain a great respect and appreciation for his contributions and participation in many endeavors, including: a merger, numerous center openings, building projects, and his willingness to assist, whenever called upon, in various projects throughout these decades.
We honor Marvin H. Easley and the service to his community and many others through his role as:
LifeShare Blood Centers, Board of Trustees Member and Finance Committee Chair, since 1979
LifeShare Blood Centers, Board of Trustees Chairman
LifeShare Blood Centers, Board of Trustees Audit Committee Chair
LifeShare Blood Centers, Civic Advisory Council Member
Blood Center Properties, Chairman and Board Member
LifeShare Blood Centers Foundation, Board Member
Our deepest appreciation for the contributions Marvin H. Easley gave to LifeShare Blood Centers.
LifeShare Board members cut the ribbon at the new
LBC-Alexandria Center is 2006.
Marvin Easley, Board Member and
Margaret Wallace, CEO, LifeShare Blood Centers
Louisiana Blood Centers 50th Anniversary Celebration, Shreveport, La.
A Gift that Truly Matters
It’s sometimes easy for us to get lost in the true meaning of the holiday season. We spend so much time worrying about what we should get those around us; we forget that others are worrying about the health of their loved ones and what we can do for them this time of year.
One gift we can be grateful for in this country is the safe and available blood supply provided by volunteer blood donors.
When you remember this blessing of resources to have a safe and adequate blood supply, do not forget that you are an integral part of it. Participation from each member in the community is key to maintaining this resource, not only for those who need it now, but for us to have available in times of crisis.
Here at LifeShare Blood Centers, we give thanks for the selfless blood donors who give not for material rewards, but out of a sense of responsibility for others in their community. We hope that in this busy holiday season others will give thanks for this simple gift of life and remember their part and responsibility in having this blessing. The need for blood donations is always present, and thanks to donors we can be thankful this gift is available to us when we need it.