Atypical HUS survey

Enter today’s date _________________ (mm/year)

Foundation for Children with Atypical HUS

Atypical Hemolytic Uremic Syndrome (Atypical HUS) Survey

INSTRUCTIONS: Please answer the following questions to the best of your ability. The survey is to be completed by the individual diagnosed with Atypical HUS (referred to as the Patient throughout the survey). It may be completed by a guardian if the individual with Atypical HUS is less than 18 years of age.

Please note that some questions may not apply to you and your family. For these items, please mark the N/A ("Not Applicable") answer choice. If you are unsure of an answer, check the D/K ("Don't Know”) answer choice.

I. Patient Information

1. Patient's Name: ________________________________________________

Last First Middle Initial

2. Your relationship to the Patient:

a)___ Self b)___ Mother c)___ Father d) Other:_______________

3. Patient's Date of Birth:

__ __/ __ __/ __ __ __ __

Month Day Year

4. Patient's Gender:

a)___ Male b)___ Female

4.1 Number of Atypical HUS occurrences

4.2 Was it diagnosed by biopsy? Yes no

4.3 Date of Diagnosis with Atypical HUS _____________________mm/yyyy

5. Which one of the following best describes the Patient’s ethnic/racial

background?

a) ____ American Indian or Alaskan

b) ____ Asian or Pacific Islander

c) ____ Black

d) ____ Hispanic

e) ____ White

f) ____ Other, please describe

8. Is the Patient adopted?

a) _____ Yes b) ______ No c) ______ D/K

9. Please list all the Countries that the patient lived in 1 year prior to

diagnosis with Atypical HUS.

a) __________________________________________________________

If the patient lived in the US, please list all the states lived in the year prior

to the diagnosis of Atypical HUS

b) __________________________________________________________

10. What is the highest grade in school completed by the person filling out the survey?

a) ___ Some high school or less

b) ___ High school diploma/GED

c) ___ Some college

d) ___ College degree

e) ___ Professional or graduate degree

II. Family Medical History-

Please answer for blood relatives of patient only

Please insert Y for yes if the person has the disease; N for no they do not have the disease; D/K for don’t know. If you leave a box blank we will assume it is No

Disease	Patient	Mother	Father	Sibling	Grandmother	Grandfather	Aunt	Uncle	Cousin
Autoimmune
Diabetes type 1- takes insulin
Celiac disease/gluten intolerance
Lupus
Rheumatoid arthritis
Thyroiditis
Scleraderma
Hypothyroid
ENT
deafness
Gastrointestinal
Crohns
Irritable bowel
Genetic Very Important
Factor H Mutation
MCP Mutation
Factor I Mutation
Family History of Atypical HUS
Family History of TTP
Hypocomplementemia
Pregnancy Atypical HUS
AdamsTS13 Mutation
Von WIllebrand Factor
Other

II. Family Medical History-

Please answer for blood relatives of patient only.

Disease	Patient	Mother	Father	Siblings	Grandmother	Grandfather	Aunt	Uncle	Cousin
Dermatology
Eczema
Psoriasis
Unexplained rashes
Mental Health
Autism/Aspergers
Bipolar
Depression
Obsessive/Compulsive
Schizophrenia
Alzheimers
Metabolic
Partial Lipodystrophy
Neurology
Parkinsons
Multiple Sclerosis
ALS/Lou Gehrigs disease
Ophthalmology
Age Related Macular Degeneration
Partial or total blindness
Drusen
Glaucoma
CV/Hematology
Abdominal Aneurysm
Henoch Schonlein Purpura

Please put Y for Yes; N for No and D/K for don’t know. If it is left blank we will assume it is Don’t Know.

III. History of Atypical HUS- Social Vectors

Please indicate whether the patient had any of the following events occur during the year prior to the diagnosis of Atypical HUS by checking the appropriate box.

Event	Yes	No	Don’t know
Physical trauma
Hospitalization
Major family life change (marriage, birth, divorce, death)
Change of school, job, home
Frequent unexplained fevers, colds, sore throats or ear infections
Known exposure to Hepatitis
Routine immunizations
Less common vaccines, ie, yellow fever- indicate below
Lead levels in your blood that were higher than normal
Exposure to unusual chemicals, pesticides or processing plant wastes

Please provide additional information on any of the above events. ________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

________________________________________________________________

III. History of Atypical HUS - Disease Onset

Please indicate the symptoms that first made the patient seek a Doctor’s care for what turned out to be Atypical HUS.

Symptom	Yes	No	Don’t Know
Flu-Like Symptoms
Not Eating
Fever
Nausea and vomiting
High blood pressure
Seizures
Blood or Protein in Urine
Upper Respiratory Infection
Abdominal Pain
Verotoxin Producing E-Coli
Viral Infection
Gastro-Intestinal Infection
Other

Please provide any additional information that you feel may have triggered or started the first episode of Atypical HUS, or any other information that you feel may be helpful ________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

________________________________________________________________________________________________________________________________

________________________________________________________________

III. History of Atypical HUS – Lab results at initial onset and current Labs

Please indicate the results for the following test that were reported by the doctor when the patient went to be seen by the doctor for what turned out to be Atypical HUS

Result	Initial Visit when Diagnosed	Worse ever recorded Level	Current normal level
Platelet count
Hemoglobin Level (g/dl)
Hematocrit Level (%)
Creatinine Level (mg/dl)
Blood Pressures
RBC (10^5 /cc)
WBC (10^3/cc)
LDH Level
Seizures or Neurological Symptoms (Yes or No)
Shistocytes present (Yes or No)
C3 Levels (Mg/dl)
Use the boxes below to report any other levels that were out of the normal range

Please add any additional information regarding labs. Include Hematology, Biochemistry, Immunology, and Urine Results that were out of the ordinary.

____________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

______________________________________________________________________

IV. Medication

Please indicate whether any of the following medications were used to treat the patient following diagnosis of ATYPICAL HUS by marking the appropriate box.

Medication	Yes	No	Don’t know
Immunoglobulin
Anti-Platelets Agents
Steroids
ACE inhibitors;enalapril,isinopril
Non Ace inhibitors; ex. vasotec
Vitamin supplements
Calcitriol (Vitamin D)
Growth hormone
Epogen
Cytoxan
Cyclosporin
Anti-Coagulants
Aspirin
Heparin
Coumadin
Anti-Oxidants
Antibiotics (please specify)
Thrombolytic Agents
Hypertension Medicines
Vincristine
Other

Other: Sometimes patients are started on a drug, after several months it is not felt to work and a drug switch is made. If this has happened, please note what drug was first used, any effects or non-effects, medication changes and if that helped. ____________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

V. Treatment of Atypical HUS

Therapies that the patient has tried since diagnosis

Therapies	Yes	No	Don’t know
Plasmaphresis
Plasma Exchange
Plasma Infusion
Plasma Cryosupernatant
Red Blood Cell Transfusions
Other
Other

Please provide any comments on the success or lack of success for the above Therapies: ________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

Vi. Alternative Treatment of Atypical HUS

Therapies that the patient has tried since diagnosis

Alternative therapy	Yes	No	Don’t know
Acupuncture
Healing touch
Reiki
Visualization
Herbal remedies

II. Family Medical History-

Please answer for blood relatives of patient only

Disease

ENT

Gastrointestinal

Genetic Very Important

Factor I Mutation

Pregnancy Atypical HUS

Disease

Mental Health

Bipolar

Alzheimers

Metabolic

Neurology

Ophthalmology

CV/Hematology

III. History of Atypical HUS- Social Vectors

III. History of Atypical HUS - Disease Onset

III. History of Atypical HUS – Lab results at initial onset and current Labs

Result

Platelet count

V. Treatment of Atypical HUS

Plasmaphresis

Vi. Alternative Treatment of Atypical HUS

Acupuncture