SurveyMonkey Powered Online Survey

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1. Who are you?

I'm a female DIAGNOSED with a bleeding disorder.

I'm a female with a DIAGNOSED collagen/soft tissue disorder - I experience bleeding symptoms.

I'm a female with a DIAGNOSED collagen/soft tissue disorder & bleeding disorder.

I'm a female LABELLED a carrier of a bleeding disorder - I experience bleeding symptoms.

I'm a female LABELLED a carrier of a bleeding disorder - I have never experienced abnormal bleeding symptoms.

I'm a female LABELLED a symptomatic carrier of a bleeding disorder - I have a treatment plan for my bleeding symptoms.

I'm a female LABELLED a symptomatic carrier of a bleeding disorder - I have no treatment for my bleeding symptoms.

I'm a female with UNDIAGNOSED bleeding symptoms.

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2. What symptoms do you experience?

Nose or Sinus bleeds

Eye bleeds

Stomach or Intestinal bleeds

Gum or Throat bleeds

Urinary bleeds

Airway or Lung bleeds

Vascular bleeds

Cranial or Brain bleeds

Muscle bleeds

Soft Tissue bleeds

Joint bleeds

Joint Hypermobility (flexible joints, able to move further than usual range)

Joint Subluxations (partial dislocation) or Joint Dislocations

Bruising or Hematomas

Heavy or long periods

Ovary or Internal bleeding

Miscellaneous vaginal bleeding

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3. What would you like to know more about or experience in your community?

Calculating blood loss through your period.

What is normal blood loss during your period.

How blood loss impacts iron levels and body function.

Iron in diet vs infusions, regaining equilibrium.

Joint bleeds, muscle bleeds, soft tissue bleeds, internal bleeds, the lot.

Meet clinicians who are pro treating female bleeders with clotting options.

How hormones and the menstruation cycle affects diagnosis.

Clotting treatment options (i.e. tranexamic acid, desmopressin and factor products)

Meet female patients who receive adequate care or factor product.

The impact of diet, natural medicine & synthetic therapy on your hormonal health.

Adequate care during pregnancy and birth.

Why symptomatic carriers do not exist.

Current achievements, progress and future goal for females with bleeding disorders.

Experiences & all about sanitary pads, tampons, menstrual cups and reusable pads/underwear.

Collecting clinical data and studies involving females with bleeding disorders.

The outcome of females who resorted to gynaecological options because they couldn't access/weren't offered treatment.

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4. Do you feel your gender has affected your ability/ease to obtain diagnosis?

Yes, I found difficulty obtaining my correct diagnosis as a female.

No, I had no difficulty obtaining my correct diagnosis as a female.

I'm unsure. (or) Not applicable I have not been assessed.

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5. Do you feel your gender has affected your ability/ease to obtain adequate care for your symptoms?

Yes, I had issues accessing adequate treatment to manage all my bleeding symptoms as a female.

No, I had no issue accessing adequate treatment to manage all my bleeding symptoms as a female.

I'm unsure. (or) Not applicable I have not been assessed.

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1. Who are you?

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2. What symptoms do you experience?

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3. What would you like to know more about or experience in your community?

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4. Do you feel your gender has affected your ability/ease to obtain diagnosis?

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5. Do you feel your gender has affected your ability/ease to obtain adequate care for your symptoms?

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6. In what country do you live?