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PubMed This is a summary of 21 peer-reviewed journal articles Updated
Hematology

What's in a VWD Emergency Travel Letter?

At a Glance

A Von Willebrand Disease emergency travel letter must detail your specific VWD subtype, baseline factor levels, exact medication dosing, drugs to avoid like NSAIDs, and 24/7 contact info for your Hemophilia Treatment Center to ensure safe emergency care.

In this answer

5 sections

01

1. Your Specific Diagnosis and Baseline Levels

02

2. Your Specific Treatment Plan

03

3. Medical Supply Authorization

04

4. Contraindications (What to Avoid)

05

5. HTC and Emergency Contact Information

An emergency travel letter for Von Willebrand Disease (VWD) must be highly specific, outlining your exact VWD subtype, your baseline blood factor levels, the specific medications that work for you, medications to avoid, and direct contact information for your Hemophilia Treatment Center (HTC) [1][2]. A simple letter stating you “have a bleeding disorder” is not enough to guide emergency room doctors who may be unfamiliar with the nuances of VWD.

You should request this letter from your hematologist or HTC, and it should be printed on official clinic letterhead and signed by your doctor. Because your treatment needs or weight can change, you should ask for an updated letter annually [3][4].

1. Your Specific Diagnosis and Baseline Levels

VWD is not a single condition; the treatment that works for one subtype might be ineffective or even harmful for another. Your letter must state:

  • Your exact VWD Type: Whether you have Type 1, 2 (and the specific subtype like 2A, 2B, 2M, or 2N), or 3 [5][6].
  • Baseline Factor Levels: Your baseline levels of VWF antigen, VWF activity (how well the protein works), and Factor VIII (FVIII:C) [7][8]. Emergency doctors need these numbers to understand how severe your deficiency is and to calculate how much medication is needed to bring your levels up to a safe range for surgery or to stop a bleed.

2. Your Specific Treatment Plan

In an emergency, doctors need to know exactly which medications stop your bleeding. Your letter should clearly define:

  • DDAVP (Desmopressin) Responsiveness: The letter must state whether you are a “responder” to DDAVP [7][5]. If you are, it should include your specific dose. For certain types of VWD (like Type 2B or severe Type 3), DDAVP may be contraindicated or ineffective [9][8].
  • Factor Replacement Therapy: If you require factor concentrates, the letter must name the exact brand and your weight-based dosing guidelines for both minor and major bleeding events or trauma [10][11][12]. Dosing is not one-size-fits-all, so a single past dose is not sufficient for an unfamiliar ER doctor treating severe trauma [13][14].
  • Allergies and Adverse Reactions: The letter should explicitly list any known drug allergies or adverse reactions to specific factor brands [11].
  • Antifibrinolytics: Information on whether you use medications like tranexamic acid or aminocaproic acid to help hold clots in place [15][16].

3. Medical Supply Authorization

If you are traveling by air, you will need to bring your medications with you. Many rural or smaller hospital ERs do not stock specialized VWF-containing products [17][18].

  • TSA/Customs Clearance: The letter should explicitly state that it is a medical necessity for you to carry your own supplies, including needles, syringes, factor concentrates, or DDAVP nasal spray, through security and customs [19][18]. Always pack these in your carry-on luggage.

4. Contraindications (What to Avoid)

To prevent medical errors in an unfamiliar setting, the letter must clearly state medical procedures and drugs that pose a danger to you.

  • Medications to Avoid: A strict instruction to avoid non-steroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen, aspirin, and naproxen, which impair platelet function and worsen bleeding [15][20].
  • Procedures to Avoid: Warnings against intramuscular (IM) injections without appropriate hemostatic (clotting) medication beforehand [10][20].

5. HTC and Emergency Contact Information

If you are injured while traveling, the local medical team should not have to manage your care alone. Your letter must include:

  • The name of your primary hematologist and your Hemophilia Treatment Center (HTC) [1][2].
  • A direct, 24/7 emergency phone number where the ER doctor can immediately reach a hematologist on call [21][2].

Common questions in this guide

Can You Develop Von Willebrand Disease Later in Life?Can You Get an Epidural with Von Willebrand Disease?Can You Have Iron Deficiency Without Anemia in VWD?Can You Play Sports with Von Willebrand Disease?Does Stress Affect Von Willebrand Disease Test Results?How Do Antifibrinolytics Work for VWD Bleeding?How Does Type O Blood Affect Von Willebrand Disease?How Is Von Willebrand Disease Inherited?Dental Work with Von Willebrand Disease: How to PrepareIs an IUD Safe for Women with Von Willebrand Disease?What Causes Delayed Postpartum Hemorrhage in VWD?What is a DDAVP Challenge Test for Von Willebrand Disease?What Is a Heavy Period with Von Willebrand Disease?Low VWF vs. Type 1 VWD: What is the Difference?Type 2N VWD vs. Hemophilia A: What's the Difference?Does Von Willebrand Disease Affect Life Expectancy?What Pain Meds Are Safe for Von Willebrand Disease?When Are Nosebleeds a Sign of Von Willebrand Disease?Why Must I Restrict Fluids After DDAVP?
Why do I need a specific emergency travel letter for Von Willebrand Disease?
A simple letter stating you have a bleeding disorder is not enough for emergency room doctors. A detailed letter provides your exact VWD subtype, baseline factor levels, and the specific medications that safely stop your bleeding.
What baseline lab levels should my VWD travel letter include?
Your letter should include your baseline levels for VWF antigen, VWF activity, and Factor VIII. Emergency doctors need these numbers to understand your deficiency severity and calculate how much medication is required for safe treatment.
Do I need a doctor's letter to take VWD medications through airport security?
Yes, your letter should explicitly state that carrying your needles, syringes, factor concentrates, or DDAVP nasal spray is a medical necessity. This documentation helps ensure smooth clearance through TSA and international customs.
What medications should my VWD travel letter say to avoid?
The letter should strictly instruct medical staff to avoid non-steroidal anti-inflammatory drugs (NSAIDs) like ibuprofen, aspirin, and naproxen. These medications impair platelet function and can dangerously worsen bleeding in VWD patients.
How often should I update my VWD emergency travel letter?
You should ask your hematologist or Hemophilia Treatment Center for an updated letter annually. This ensures the document reflects your current weight, which affects medication dosing, and any recent changes to your treatment plan.

Questions for Your Doctor

5 questions

  • •What is my exact baseline for VWF antigen, VWF activity, and Factor VIII so we can include it in the letter?
  • •Am I a confirmed responder to DDAVP, and what is my precise emergency dosage?
  • •Can you provide weight-based dosing guidelines for factor concentrate for both minor bleeds and major trauma?
  • •Do you have a standard emergency travel letter template at the clinic that includes authorization for carrying needles and medical supplies through security?
  • •What is the best 24/7 phone number for an out-of-state ER doctor to reach the hematologist on call?

Questions for You

3 questions

  • •Is my travel letter less than a year old, and does it reflect my current weight and treatment plan?
  • •Do I have physical copies of my letter to keep in my wallet and travel documents, as well as a digital copy saved on my phone?
  • •Do I have enough of my prescribed emergency medications to pack in my carry-on bag for the entire trip?

References

References (21)
  1. 1

    Occurrence rates of von Willebrand disease among people receiving care in specialized treatment centres in the United States.

    Michael Soucie J, Miller CH, Byams VR, et al.

    Haemophilia : the official journal of the World Federation of Hemophilia 2021; (27(3)):445-453 doi:10.1111/hae.14263.

    PMID: 33780098
  2. 2

    Von Willebrand Disease and Pregnancy: Management Protocol From Labor to the Postpartum Period.

    Muñoz Vargas BA, Contreras Valero SJ, Aragon Mendoza RL, et al.

    Cureus 2024; (16(2)):e53465 doi:10.7759/cureus.53465.

    PMID: 38435184
  3. 3

    How I treat von Willebrand disorders in older adults.

    Poston JN, Kruse-Jarres R

    Blood 2024; (143(3)):197-204 doi:10.1182/blood.2022018534.

    PMID: 37672774
  4. 4

    2025 ASH ISTH NBDF WFH monitoring report on the 2021 clinical guidelines on the diagnosis and management of von Willebrand disease.

    James PD, Flood VH, Connell NT

    Blood advances 2025; (9(14)):3553-3555 doi:10.1182/bloodadvances.2025016512.

    PMID: 40273329
  5. 5

    ASH ISTH NHF WFH 2021 guidelines on the diagnosis of von Willebrand disease.

    James PD, Connell NT, Ameer B, et al.

    Blood advances 2021; (5(1)):280-300 doi:10.1182/bloodadvances.2020003265.

    PMID: 33570651
  6. 6

    von Willebrand disease: A guide for the internist.

    Kaur V, Elghawy O, Deshpande S, Riley D

    Cleveland Clinic journal of medicine 2024; (91(2)):119-127 doi:10.3949/ccjm.91a.22033.

    PMID: 38307601
  7. 7

    Comparative assessment of von Willebrand factor multimers vs activity for von Willebrand disease using modern contemporary methodologies.

    Favaloro EJ, Oliver S, Mohammed S, Vong R

    Haemophilia : the official journal of the World Federation of Hemophilia 2020; (26(3)):503-512 doi:10.1111/hae.13957.

    PMID: 32159272
  8. 8

    Desmopressin testing in von Willebrand disease: Lowering the burden.

    Heijdra JM, Atiq F, Al Arashi W, et al.

    Research and practice in thrombosis and haemostasis 2022; (6(6)):e12784 doi:10.1002/rth2.12784.

    PMID: 36186107
  9. 9

    Practical aspects of DDAVP use in patients with von Willebrand Disease undergoing invasive procedures: a European survey.

    Windyga J, Dolan G, Altisent C, et al.

    Haemophilia : the official journal of the World Federation of Hemophilia 2016; (22(1)):110-20 doi:10.1111/hae.12763.

    PMID: 26207933
  10. 10

    Analysis of current perioperative management with Haemate® P/Humate P® in von Willebrand disease: Identifying the need for personalized treatment.

    Hazendonk HCAM, Heijdra JM, de Jager NCB, et al.

    Haemophilia : the official journal of the World Federation of Hemophilia 2018; (24(3)):460-470 doi:10.1111/hae.13451.

    PMID: 29573506
  11. 11

    A thrombopoietin receptor agonist to rescue an unusual platelet transfusion-induced reaction in a p.V1316M-associated von Willebrand disease type 2B patient.

    Casari C, Favier R, Legendre P, et al.

    Therapeutic advances in hematology 2022; (13()):20406207221076812 doi:10.1177/20406207221076812.

    PMID: 35186246
  12. 12

    Rewriting the script: gene therapy and genome editing for von Willebrand Disease.

    Barraclough A, Bär I, van Duijl T, et al.

    Frontiers in genome editing 2025; (7()):1620438 doi:10.3389/fgeed.2025.1620438.

    PMID: 41058711
  13. 13

    Phase 3 study of recombinant von Willebrand factor in patients with severe von Willebrand disease who are undergoing elective surgery.

    Peyvandi F, Mamaev A, Wang JD, et al.

    Journal of thrombosis and haemostasis : JTH 2019; (17(1)):52-62 doi:10.1111/jth.14313.

    PMID: 30362288
  14. 14

    Characterization of the mutation spectrum in a Pakistani cohort of type 3 von Willebrand disease.

    Ahmed S, Yadegari H, Naz A, et al.

    Haemophilia : the official journal of the World Federation of Hemophilia 2019; (25(6)):1035-1044 doi:10.1111/hae.13841.

    PMID: 31532876
  15. 15

    Practical aspects of factor concentrate use in patients with von Willebrand disease undergoing invasive procedures: a European survey.

    Windyga J, Dolan G, Altisent C, et al.

    Haemophilia : the official journal of the World Federation of Hemophilia 2016; (22(5)):739-51 doi:10.1111/hae.12955.

    PMID: 27292438
  16. 16

    Effectiveness of long-term prophylaxis using pdFVIII/VWF concentrate in patients with inherited von Willebrand disease.

    Rugeri L, Harroche A, Repessé Y, et al.

    European journal of haematology 2022; (109(1)):109-117 doi:10.1111/ejh.13778.

    PMID: 35438801
  17. 17

    Hemophilia management: Huge impact of a tiny difference.

    Kloosterman F, Zwagemaker AF, Abdi A, et al.

    Research and practice in thrombosis and haemostasis 2020; (4(3)):377-385 doi:10.1002/rth2.12314.

    PMID: 32211572
  18. 18

    Role of Desmopressin in Bleeding Disorders: What Indian Physicians Need to Know?

    Malve H, Goswami P, Asalkar A, More D

    The Journal of the Association of Physicians of India 2025; (73(1)):58-60 doi:10.59556/japi.73.0796.

    PMID: 39893530
  19. 19

    The Evolution of Hemophilia Care: Clinical and Laboratory Advances, Opportunities, and Challenges.

    Trinchero A, Sholzberg M, Matino D

    Hamostaseologie 2020; (40(3)):311-321 doi:10.1055/a-1175-6530.

    PMID: 32726826
  20. 20

    von Willebrand disease.

    Seidizadeh O, Eikenboom JCJ, Denis CV, et al.

    Nature reviews. Disease primers 2024; (10(1)):51 doi:10.1038/s41572-024-00536-8.

    PMID: 39054329
  21. 21

    Bleeding-related hospitalization in patients with von Willebrand disease and the impact of prophylaxis: Results from national registers in Sweden compared with normal controls and participants in the von Willebrand Disease Prophylaxis Network.

    Holm E, Carlsson KS, Lövdahl S, et al.

    Haemophilia : the official journal of the World Federation of Hemophilia 2018; (24(4)):628-633 doi:10.1111/hae.13473.

    PMID: 29626372

This page explains what to include in a VWD emergency travel letter for informational purposes only. Always consult your hematologist or Hemophilia Treatment Center to create a personalized medical travel plan.

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