Texas
Family Testifies before Labor Health and Human
Services Subcommittee
to Plead for Kidney Disease Research
Oral Testimony - March 13, 2008
"Chairman Obey and members of the Subcommittee, thank you for the opportunity to appear before you today. I am Dee Ryan and my husband is Lieutenant Colonel John Kevin Ryan, an Iraq war veteran. I am here today to tell you about our 6 year old daughter Jenna’s nephritic syndrome (NS), a medical problem caused by rare diseases of the kidney filter which causes the leakage protein from the blood into the urine and can often cause kidney failure. Our physician tells us Jenna has one of two filter diseases called Minimal Change Disease (MCD) or Focal and Segmental Glomerulosclerosis (FSGS). According to a Harvard University report, there are presently 73,000 people in the United States who have lost their kidneys as a result of FSGS. Unfortunately, the causes of FSGS and other filter diseases are very poorly understood.
In October of 2007 Jenna began to experience general swelling of her body, intermittent abdominal pain, fatigue and general malaise. She developed a cough and her stomach became dramatically distended. We rushed Jenna to the emergency room where her breathing became more and more labored and her pulse raced. She had symptoms of pulmonary edema, tachycardia, hypertension, and pneumonia. Her lab results showed a large amount of protein in the urine and a low concentration of the blood protein albumin, consistent with the diagnosis of FSGS. Jenna’s condition did not begin to stabilize for several frightening days.
We are frightened by her doctor’s warnings that NS and its treatment are associated with growth retardation and other medical complications including heart disease. Jenna has already developed hypercholesterolemia. This is a lot for a little girl in kindergarten to endure.
Jenna’s prognosis is currently unknown because nephritic syndrome can reoccur and NS has been known to commonly reappear even after kidney transplant. Even with a transplant, FSGS can dramatically shorten one’s life span. Accompanying me at today’s hearing is Michael Levine. Michael’s son Matthew is desperately ill with FSGS. Without improvements in treatments brought about by additional research, Matthew’s fate is uncertain. It is more than likely that Matthew will require a kidney transplant in the near future, and even the, there is no guarantee at all that transplanted kidneys will reverse Matthew’s illness.
As parents, we are working against the clock to find answers to these terrible disorders which seriously debilitate our children, tear our families apart, and keep us awake at night. Mr. Chairman, because the causes of FSGS and Nephrotic Syndrome are poorly understood, I am asking you to please significantly increase funding for the National Institutes of Health so that treatments can be found for Jenna, Matthew, and other people who suffer from FSGS and NS. Also, please support the establishment of a collaborative research network which would allow scientists to create a patient registry and biobank for NS/FSGS, and that would allow coordinated studies of these deadly diseases for the first time. Finally, please urge the National Institute of Diabetes and Digestive and Kidney Disease (NIDDK) to fund more grants on FSGS/NS research, consistent with its recent program announcement entitled Grants for Basic Research in Glomerular Disease (R01) (PA-07-367).
Mr. Chairman, on behalf of Jenna, Matthew Levine, and the thousands of people suffering from NS and FSGS, thank you for this opportunity to speak before the Subcommittee and for your consideration of my requests."
Dee Ryan
The Ryan Family also recently met with their hometown Congressman, Michael Burgess. At this meeting they discussed the harsh reality of families affected by these diseases and the need for increased funding and research sponsored by the government into Nephrotic Syndrome and FSGS. To read more about this meeting visit: Ryan Family Meets with Congressman Burgess