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Getting to Know You- Patient DetailsView: Translations (EN) Original language
I've enjoyed reading many posts and look forward to hearing more about your family's journey with aHUS. It would be wonderful if each member online would post a profile outlining details that would help us all relate to and understand each other's interest areas regarding aHUS.
Suggested details might include: circumstances at initial diagnosis (age/suspected trigger/etc), aHUS episodes (continuous, episodic, timeframes), treatment options tried (plasma infusions, pheresis, eculizumab), dialysis (Hemo or PD/years of treatments/ concerns or issues), and transplants (kidney-liver, kidney with eculizumab therapy, future transplant, past transplant).
Knowing details would allow patients/families with similar concerns or interest areas to connect - sharing information and support. I look forward to reading your family's story.
Last Name: Caputo
Diagnosis: CTA with modification of Factor H (Bearer of the change is the mother)
age at first manifestation: 8 months old
Symptoms: repeated episodes of vomiting, hemoglobin 6, plt 50,000
Treatment: Blood transfusions, plasma infusions, plasmapheresis, dialysis, eculizumab/SOLIRIS
To date, Dodo has recovered the renal functions, no abnormal symptoms, seems to be healing.
Notice: This text content has been translated automatically by a third-party service.
It is unknown what causes aHUS to 'trigger' or activate in patients - some reports of fevers, exposure to common bacteria/viral illnesses, childbirth or pregnancy, physicial trama and such events are often mentioned by patients/parents as possible 'triggers' to the complement cascade.
My son Hunter presented with aHUS at 10 months of age, following a brief fever related to his childcare exposure. Hunter never did have any repite from aHUS episodes but continually had difficulty, treated first with plasma infusions and then mostly with plasmapheresis, until his failed kidney/liver transplant caused his death in May 2008 at age 5 and a half years old.
My son Skyler's aHUS was activated at almost 4 years old, May 2009 - 10 months after his brother Hunter's death. Both boys had genetic testing at the University of Iowa, noting a factor H mutation (Hunter also had his genetic screening with Dr. Remuzzi in Italy, too). Since we had a great medical team already in place for Hunter, we found out about Soliris (eculiumab) and asked our doctors to explore this option. Our docs were able to get Soliris for Skyler on a 'compassionate use' waiver...only 12 days after Skyler's initial presentation with aHUS. This fast action means that today Skyler has 100% kidney function and is not on ANY medication.....we are so thankful for this miracle for our youngest son!