EMERGENCY PREPAREDNESS KIT

This patient has Marfan syndrome or a related disorder, which placeshim/her at up to 250 times greater risk for aortic dissection than thegeneral population. DO NOT send this person home until the possibilityof aortic dissection is ruled out.

This kit is your tool to help you be prepared in the event of an emergency. We suggestputting the completed packet in a brightly colored envelope or folder so it is easy to find.At home, keep it near the door so it is handy for Emergency Medical Services (EMS) andperhaps tack it up on the wall at work. Also provide a copy of this packet to your Power ofAttorney and Healthcare Proxy. Portable USB drives can hold all this information and canbe carried on a key chain. Some medical alert services have these drives available withtheir logo or you can purchase them in any office supply store.

Many people put emergency contact information in their cell phone filed under ICE (In Caseof Emergency). Use ICE1, ICE2 and so on. EMS people are trained to look for this on your cellphone.

Patient Name:

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EMERGENCY PREPAREDNESS KIT

Included Item Last Updated

o Personal Information Form

o Medical History

o Doctor(s) Information

o Insurance Information

o Family Medical History

o Power of Attorney (sample included under Legal Information, below)

o Healthcare Proxy (sample included under Legal Information)

o Living Will (sample included under Legal Information)

o Do Not Resuscitate Order (sample included under Legal Information)

Include a copy of the most recent version of each of the following from your doctor

o ECHO Tape/CD with Written Report

o MRI Films with Written Report

o CT Films with Written Report

o Blood Work Results

Other resources

o Marfan Syndrome: Basic Facts

o Fact Sheet for Paramedics and Emergency Medical Technicians

o Legal Information

o Medical Alert Bracelet Information

o Emergency Alert Card

CHECKLISTWe recommend that you complete these documents so they are available in case of anemergency. Remember to update your information regularly.

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EMERGENCY PREPAREDNESS KIT

PERSONAL INFORMATIONFirst Name: Last Name:

Date of Birth: Soc.Sec.No.: – –

Gender: o Male o Female Marital Status:

Contact Information

Home Address:

City: State: Zip:

Home Phone: Work Phone:

Cell Phone: Email:

Occupation: Employer:

Work Address:

City: State: Zip:

Health-related Information

Height: Weight: Blood Type:

Normal Blood Pressure: Resting Heart Rate:

Alcohol Consumption (number of drinks consumed): o per Day o per Week

Smoking: o Non Smoker o 1 pack or less/week o 2–3 packs/week o 1 pack/day o More than 1 pack/day

Language Information

Language spoken at home: Do you need an interpreter? o Yes o No

If you need an interpreter and the hospital is temporarily unable to provide one, who can they contact toprovide assistance?

Name: Work Phone:

Home Phone: Cell Phone:

Emergency Contacts

Contact 1 First Name: Last Name:

Address: Relationship:

City: State: Zip:

Home Phone: Work Phone: Cell Phone:

Contact 2 First Name: Last Name:

Address: Relationship:

City: State: Zip:

Home Phone: Work Phone: Cell Phone:

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EMERGENCY PREPAREDNESS KIT Page 1

MEDICAL HISTORYFirst Name: Last Name:

Diagnosis

What condition do you have? o Marfan Syndrome o Related Disorder Specify:

Age at diagnosis:

Current Medications (include vitamins/supplements)

1. Name: Dosage:

Reason: Schedule:

2. Name: Dosage:

Reason: Schedule:

3. Name: Dosage:

Reason: Schedule:

4. Name: Dosage:

Reason: Schedule:

If you have additional medications, please list them on page 3 of this form.

Allergies

1. 4.

2. 5.

3. 6.

Cardiac History (Heart)

What cardiac issues do you have (e.g., mitral valve prolapse, bicuspid aortic valve or aortic aneurysm/dis-section)?

Please attach most recent imaging studies.

Ocular History (Eyes)

What ocular issues do you have (e.g., retinal detachment, strabismus or cataracts)?

Please attach most recent imaging studies.

Orthopedic History (Bones & Joints)

What skeleton and joint issues do you have (e.g., scoliosis, protrusio acetabulae or kyphosis)?

Please attach most recent imaging studies.

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EMERGENCY PREPAREDNESS KIT: MEDICAL HISTORY Page 2

First Name: Last Name:

Recent Surgeries /Procedures

What surgeries/procedures have you had (e.g., aortic repair, pectus surgery, eye surgery)?

1. Surgery/Procedure:

Date: Location:

Doctor who performed surgery: Doctor’s phone:

2. Surgery/Procedure:

Date: Location:

Doctor who performed surgery: Doctor’s phone:

3. Surgery/Procedure:

Date: Location:

Doctor who performed surgery: Doctor’s phone:

4. Surgery/Procedure:

Date: Location:

Doctor who performed surgery: Doctor’s phone:

5. Surgery/Procedure:

Date: Location:

Doctor who performed surgery: Doctor’s phone:

6. Surgery/Procedure:

Date: Location:

Doctor who performed surgery: Doctor’s phone:

7. Surgery/Procedure:

Date: Location:

Doctor who performed surgery: Doctor’s phone:

8. Surgery/Procedure:

Date: Location:

Doctor who performed surgery: Doctor’s phone:

If you have additional surgeries/procedures, please list them on page 4 of this form.

MEDICAL HISTORY

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EMERGENCY PREPAREDNESS KIT: MEDICAL HISTORY Page 3

MEDICAL HISTORYFirst Name: Last Name:

Additional Current Medications (include vitamins/supplements)

5. Name: Dosage:

Reason: Schedule:

6. Name: Dosage:

Reason: Schedule:

7. Name: Dosage:

Reason: Schedule:

8. Name: Dosage:

Reason: Schedule:

9. Name: Dosage:

Reason: Schedule:

10. Name: Dosage:

Reason: Schedule:

11. Name: Dosage:

Reason: Schedule:

12. Name: Dosage:

Reason: Schedule:

13. Name: Dosage:

Reason: Schedule:

14. Name: Dosage:

Reason: Schedule:

15. Name: Dosage:

Reason: Schedule:

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EMERGENCY PREPAREDNESS KIT: MEDICAL HISTORY Page 4

MEDICAL HISTORYFirst Name: Last Name:

Additional Recent Surgeries /Procedures

What surgeries/procedures have you had (e.g., aortic repair, pectus surgery, eye surgery)?

9. Surgery/Procedure:

Date: Location:

Doctor who performed surgery: Doctor’s phone:

10. Surgery/Procedure:

Date: Location:

Doctor who performed surgery: Doctor’s phone:

11. Surgery/Procedure:

Date: Location:

Doctor who performed surgery: Doctor’s phone:

12. Surgery/Procedure:

Date: Location:

Doctor who performed surgery: Doctor’s phone:

13. Surgery/Procedure:

Date: Location:

Doctor who performed surgery: Doctor’s phone:

14. Surgery/Procedure:

Date: Location:

Doctor who performed surgery: Doctor’s phone:

15. Surgery/Procedure:

Date: Location:

Doctor who performed surgery: Doctor’s phone:

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EMERGENCY PREPAREDNESS KIT Page 1

DOCTOR(S) INFORMATIONFirst Name: Last Name:

Primary Care Physician

First Name: Last Name:

Address:

City: State: Zip:

Office Phone: Pager: Fax:

Cardiologist

First Name: Last Name:

Address:

City: State: Zip:

Office Phone: Pager: Fax:

Ophthalmologist

First Name: Last Name:

Address:

City: State: Zip:

Office Phone: Pager: Fax:

Orthopedist

First Name: Last Name:

Address:

City: State: Zip:

Office Phone: Pager: Fax:

Geneticist

First Name: Last Name:

Address:

City: State: Zip:

Office Phone: Pager: Fax:

Other Specialist

First Name: Last Name:

Medical Specialty:

Address:

City: State: Zip:

Office Phone: Pager: Fax:

If you have additional doctors, please list them on page 2 of this form.

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EMERGENCY PREPAREDNESS KIT: DOCTOR(S) INFORMATION Page 2

DOCTOR(S) INFORMATIONFirst Name: Last Name:

Other Specialist

First Name: Last Name:

Address:

City: State: Zip:

Office Phone: Pager: Fax:

Other Specialist

First Name: Last Name:

Address:

City: State: Zip:

Office Phone: Pager: Fax:

Other Specialist

First Name: Last Name:

Address:

City: State: Zip:

Office Phone: Pager: Fax:

Other Specialist

First Name: Last Name:

Address:

City: State: Zip:

Office Phone: Pager: Fax:

Other Specialist

First Name: Last Name:

Address:

City: State: Zip:

Office Phone: Pager: Fax:

Other Specialist

First Name: Last Name:

Medical Specialty:

Address:

City: State: Zip:

Office Phone: Pager: Fax:

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EMERGENCY PREPAREDNESS KIT

INSURANCE INFORMATIONFirst Name: Last Name:

Primary Health Insurance

Type of Policy: o EPO o HMO o PPO o POS o Other, please specify:

Authorization required: o Yes o No Authorization No.: Effective Date:

Insurance Company:

Address: Phone:

City: State: Zip:

Subscriber: o Self o Spouse o Other, please specify:

Subscriber First Name: Subscriber Last Name:

Subscriber ID Number: Subscriber Date of Birth:

Subscriber Employer:

Employer Address: Group number:

Address: Phone:

City: State: Zip:

Secondary Health Insurance

Type of Policy: o EPO o HMO o PPO o POS o Other, please specify:

Authorization required: o Yes o No Authorization No.: Effective Date:

Insurance Company:

Address: Phone:

City: State: Zip:

Subscriber: o Self o Spouse o Other, please specify:

Subscriber First Name: Subscriber Last Name:

Subscriber ID Number: Subscriber Date of Birth:

Subscriber Employer:

Employer Address: Group number:

Address: Phone:

City: State: Zip:

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EMERGENCY PREPAREDNESS KIT

FAMILY MEDICAL HISTORYFirst Name: Last Name:

Father Mother

o Aortic Dissection

o Asthma

o Blood Disorder (e.g., anemia)

o Congestive Heart Failure

o COPD (chronic obstructive pulmonary disease)

o Coronary Artery Disease

o Diabetes

o Malignancy

o Neuromuscular Weakness

o Obstructive Sleep Apnea

o Pancreatitis

o Peripheral Artery Disease

o Renal Dysfunction

o Seizures

o Thyroid Disease

o Other (please specify):

o Aortic Dissection

o Asthma

o Blood Disorder (e.g., anemia)

o Congestive Heart Failure

o COPD (chronic obstructive pulmonary disease)

o Coronary Artery Disease

o Diabetes

o Malignancy

o Neuromuscular Weakness

o Obstructive Sleep Apnea

o Pancreatitis

o Peripheral Artery Disease

o Renal Dysfunction

o Seizures

o Thyroid Disease

o Other (please specify):

Grandparents Other Relatives

o Aortic Dissection

o Asthma

o Blood Disorder (e.g., anemia)

o Congestive Heart Failure

o COPD (chronic obstructive pulmonary disease)

o Coronary Artery Disease

o Diabetes

o Malignancy

o Neuromuscular Weakness

o Obstructive Sleep Apnea

o Pancreatitis

o Peripheral Artery Disease

o Renal Dysfunction

o Seizures

o Thyroid Disease

o Other (please specify):

o Aortic Dissection

o Asthma

o Blood Disorder (e.g., anemia)

o Congestive Heart Failure

o COPD (chronic obstructive pulmonary disease)

o Coronary Artery Disease

o Diabetes

o Malignancy

o Neuromuscular Weakness

o Obstructive Sleep Apnea

o Pancreatitis

o Peripheral Artery Disease

o Renal Dysfunction

o Seizures

o Thyroid Disease

o Other (please specify):

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FACT SHEET FOR PARAMEDICS ANDEMERGENCY MEDICAL TECHNICIANS

Marfan Syndrome and Aortic Dissection

What is Marfan syndrome?Marfan syndrome is a life-threatening genetic disorder, and an early, accurate diagnosis isessential, not only for people with Marfan syndrome, but also for those with related disorders.Marfan syndrome affects our connective tissue, which helps to hold the body’s cells and tissuestogether. It also regulates how our bodies grow. Knowing the signs of Marfan syndrome cansave lives. Our community of experts estimates that nearly half of the people who haveMarfan syndrome don't know it. Without proper diagnosis and treatment, they are at highrisk for aortic dissection and sudden death. Some features of Marfan syndrome are easier tosee than others. These include long arms, legs, and fingers; tall and thin body type; a curvedspine; sunken or protruding chest; flexible joints; flat feet; crowded teeth; and unexplainedstretch marks on the skin. Harder-to-detect signs include heart problems, especially related tothe aorta, the large blood vessel that carries blood away from the heart. Other signs includesudden collapse of a lung and eye problems, including severe nearsightedness, dislocatedlens, detached retina, early glaucoma, and early cataracts.

What is aortic dissection?One of the primary features of Marfan syndrome, as well as certain related disorders, is afragile aorta which is prone to dissection. An aortic dissection is a tear involving the innerlayer of the aortic wall, which allows blood to enter and creates a separation of the inner andouter layers of this vessel. Dissection can lead to a weakening of the outer wall, resulting inrupture or aneurysm formation; occlusion of aortic branch vessels causing myocardialinfarction, pericardial tamponade, stroke, kidney failure, bowel ischemia, paraplegia or limbischemia; and disruption of the aortic valve, resulting in valvular insufficiency and cardiacfailure.

Why is emergency diagnosis and treatment of aortic dissection an important issue?An aortic dissection that remains untreated will ultimately lead to a fatal rupture. In the absenceof urgent surgical intervention, the fatality rate associated with acute aortic dissection thatoriginates near the heart is very high. This makes it essential to evaluate symptoms that couldbe related to a dissection.

What are the symptoms of aortic dissection?The patient with an aortic dissection usually complains of severe pain, most often in thechest (front, back, or both), and commonly between the shoulder blades. Occasionally, thepain may be reported as being in the upper abdomen (if the tear begins in that part of theaorta). The patient may describe the pain as ripping, tearing, or sharp like a knife. It may alsobe described as pleuritic.

Symptoms and signs of shock are ominous findings, and indicate that the dissection hasprogressed to the point at which tissue perfusion is compromised. However, dissections can

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also cause a variety of other symptoms in the extremities: pain, pallor, pulselessness, paras-thesias; and paralysis (the 5 Ps). There may also be classic features of Marfan syndrome,such as disproportionately long arms, legs fingers and toes; pigeon breast (in which thebreast bone protrudes forward); funnel chest (in which the breast bone caves inward); andmarked curvature of the spine. Rarely, if the dissection compromises blood flow to the spinalcord, there may be weakness in one or both legs or arms. In addition, neurologic events thatwould seem due to a stroke or transient ischemic attack (TIA) may be due to a dissection.

Important points of the physical examination, patient history, and assessment that raise thepossibility of an aortic dissection:

• Take note if the patient tells you that he/she has an aneurysm, Marfan syndrome, or family history of Marfan syndrome

NOTE: This should alert the EMS provider to consider rapid transport with treatmentprovided en route.

• The patient may describe symptoms of shock.

• The patient may describe pain or paresthesias in extremities.

• The patient may describe the pain in the front or back of the chest or upper abdomenas ripping, tearing, or sharp like a knife. At times, it is described as pleuritic.

• During the physical examination, the following findings may be noted:

• signs of shock

• pallor, pulselessness, paralysis in extremities

• disproportionately long arms, legs, fingers and toes

• pigeon breast (in which the breast bone protrudes outward)

• funnel chest (in which the breast bone prominently caves inward)

• marked curvature of the spine.

EMERGENCY CARE FOR AORTIC DISSECTIONBasic Life Support (BLS) Advanced Life Support (ALS)

Follow the local or regional treatment and transport standards for SHOCK.

For additional information, contact:

The Marfan Foundation22 Manhasset Ave.Port Washington, NY 11050800-8-MARFANwww.marfan.org

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LEGAL INFORMATIONPLEASE NOTE: This section and the sample forms included are NOT intended to be treated as legal advice.

Laws pertaining to healthcare matters and patients’ rights and wishes vary greatly from state to state. The

Marfan Foundation strongly encourages you to contact a legal professional in your state for full and complete

guidance and legal advice on these complicated and sensitive issues, both in general and particularly before

completing any of the forms included in this packet.

The legal, ethical, and psychological issues surrounding serious illness and death aren’t easyto discuss. But it’s far easier on everyone if you have a healthcare proxy, durable power ofattorney, living will, and other advance directives in place before you’re faced with a seriousaccident or illness. If you don’t have these documents prepared in advance, you may findyourself in a situation in which you’re unable to communicate your wishes regarding the extent of treatment efforts, such as resuscitation and life-support machines. The followingpages are provided to help you communicate your wishes should you be unable to do so inthe event of an emergency. If you have any other questions please feel free to contact us at(800) 8-MARFAN.

What Is a Power of Attorney?

A power of attorney is a document in which you state that you give someone else (usually arelative or friend) the authority to make certain decisions and act on your behalf. The personto whom you give these powers is called an “agent” or “attorney-in-fact.” You are called the“principal.” Just because the word attorney is used does not mean that the person you giveauthority to has to be a lawyer.

Executing a power of attorney does not mean that you can no longer make decisions; it justmeans that another person can act for you also. For example, you may be hospitalized for abrief period of time and need someone to deposit your checks in the bank or pay your bills.As long as you are capable of making decisions, the other person must follow your directions.You are simply sharing your power with someone else. You can revoke the agent's authorityunder the power of attorney at any time if you become dissatisfied with what they are doing.A power of attorney ends upon your death. Thereafter, your will, or the law of intestacy, governsthe handling of your estate. A power of attorney document is not a substitute for a will.

© Copyright, 2005 Legal Services for the Elderly

EMERGENCY PREPAREDNESS KIT Page 1

Lawyer’s Name:

Law Firm:

Address:

City: State: Zip:

Phone:

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What Is a Healthcare Proxy?

A healthcare proxy is a written document used by any competent person to authorize anotherperson, usually a family member, to make healthcare decisions if the person who signs theproxy becomes unable to do so.

When you complete a healthcare proxy, you can either give complete authority to your“proxy” to make all decisions regarding your healthcare, or you can give specific instructionsto the person you designate regarding specific issues (such as your desire to have yourbreathing artificially maintained by medical equipment, etc.).

Why do I need a healthcare proxy?Without a healthcare proxy, your doctor may be required to provide you with medicaltreatment that you would have refused if you were able to do so. For example, your doctormay be required to provide you with artificial nutrition and hydration, a respirator, or CPR,even though you are in a coma with no hope of recovery, or are terminally ill.

When does it take effect?The healthcare proxy becomes effective only when you become unable to make decisions,as determined by a physician. Until then, you continue to be in charge of making your ownhealthcare decisions. It can be revoked orally, and you always have the right while competentto sign a new healthcare proxy.

How is a healthcare proxy different than a power of attorney?A healthcare proxy is different than a power of attorney. A power of attorney primarily authorizes the person you designate to make financial decisions for you. It cannot be usedto make healthcare decisions. You must complete a healthcare proxy in order to have anagent make healthcare decisions when you are not able.

What is the difference between a healthcare proxy and a living will?A healthcare proxy is also different than a living will, although each serves the same purposeof allowing you to make decisions in advance about your healthcare. A living will is a documentthat you sign in advance in which you specifically set forth your decisions about healthcaretreatment. Unlike the healthcare proxy, however, it does not authorize you to appoint an agentto make decisions that you did not anticipate when you completed the living will. The health-care proxy provides specific instructions and also designates an agent to make decisionswhen there are events you did not anticipate.

What Is a Living Will?

Many people recognize that death is as much a part of the life cycle as birth, growth, maturity,and old age. Some states allow persons to manage their final illness through a “living will,” alegal document of healthcare instructions. In some states this document simply providesdirections and instructions to your doctor. In other states, it also permits you to appoint ahealthcare proxy—a person who can make decisions for you when you are not able to do sobecause of illness or incapacitation. Some states call this document a living will while otherscall it an “advance directive.” It may include a directive to physicians to withhold or withdrawlife-sustaining procedures under certain circumstances.

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A living will or advance directive is effective from the date it is executed until you die or untilthe directive is revoked. If more than one living will or advance directive has been executed,the last one to be executed will control.

Living wills vary between states.

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Healthcare Proxy (SAMPLE)Durable Power of Attorney for Healthcare

I, __________________________(your name), hereby appoint ________________________(Name, home address, telephone number) as my healthcare agent to make any and allhealthcare decisions for me, except to the extent that I state otherwise. This proxy shall takeeffect when and if I become unable to make my own healthcare decisions.

Optional instructions: I direct my agent to make healthcare decisions in accordance with mywishes and limitations as stated below, or as he or she otherwise knows. I have discussedwith my healthcare proxy my wishes regarding artificial hydration and nutrition. (Attach ad-ditional pages if necessary.

_________________________________________________________________________________________________________________________________________________________________________________________________________________________________

(Unless your agent knows your wishes about artificial nutrition and hydration feeding tubes,your agent will not be allowed to make decisions about artificial nutrition and hydration.)

Name of substitute or fill-in agent if the person I appoint above is unable, unwilling or unavailable to act as my healthcare agent: _______________________________________(Name, home address, telephone number)

Unless I revoke it, this proxy shall remain in effect indefinitely, or until the date or conditionsstated below.

This proxy shall expire (specify date or conditions, if desired): ________________________

Signature __________________________________________ Date ___________________Address ____________________________________________________________________

Statement by Witness (must be 18 or older. Witness cannot be the person chosen as thehealthcare proxy.): I declare that the person who signed this document is personally knownto me and appears to be of sound mind and acting on his or her own free will. He or shesigned (or asked another to sign for him or her) this document in my presence.

Witness 1 name (print) __________________________ Signature _____________________Address ____________________________________________________________________

Witness 2 name (print) __________________________ Signature _____________________Address ____________________________________________________________________

COPIES OF THIS FORM SHOULD BE GIVEN TO YOUR HEALTH CARE PROXY, YOUR DOCTOR AND YOUR ATTORNEY.

KEEP AN EXTRA COPY FOR YOUR RECORDS.

PLEASE NOTE: This form is provided as an example, it is not intended to provide legal advice and should not

be completed without the advice and assistance of an attorney in your state who is generally knowledgeable

in matters relating to healthcare and patients’ rights.

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Non-Hospital Order Not to Resuscitate (SAMPLE)

DO NOT RESUSCITATE THE PERSON NAMED ABOVE.

It is the responsibility of the physician to determine, at least every 90 days, whether thisorder continues to be appropriate, and to indicate this by a note in the person’s medicalchart. The issuance of a new form is NOT required, and under the law this order should beconsidered valid unless it is known that it has been revoked. This order remains valid andmust be followed, even if it has not been reviewed within the 90 day period.

Adapted from the New York State Department of Health

PLEASE NOTE: This form is provided as an example, it is not intended to provide legal advice and should not

be completed without the advice and assistance of an attorney in your state who is generally knowledgeable

in matters relating to healthcare and patients’ rights.

EMERGENCY PREPAREDNESS KIT: LEGAL INFORMATION Page 5

Person’s Name:

Date of Birth:

Physician’s Name (please print):

Physician’s Signature:

License Number:

Date:

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MEDICAL ALERT BRACELET Another Tool for Ensuring Correct Emergency Care

People with Marfan syndrome and related disorders know they are at increased risk of aorticdissection. Often, they are more knowledgeable about their condition than the healthcareproviders who treat them. This can be problematic and, in fact, life-threatening in the hospitalemergency department when quick diagnosis and treatment of aortic dissection is critical tosaving an individual’s life.

We strongly urge people with Marfan syndrome and related disorders to wear a medicalalert bracelet to safeguard their own health. Check with your physician to determine theappropriate wording for your bracelet.

Although there are many companies that offer this service, one of the most well-known isMedicAlert®. For more information about MedicAlert, call 888-633-4298 or visitMedicAlert.org.

EMERGENCY PREPAREDNESS KIT

EMERGENCY ALERT CARD

EMERGENCY PREPAREDNESS KIT

INSTRUCTIONS

1. Print this page on a color printer at actual size (check printer settings so it does not scale up or down).

2. Cut along perimeter indicated by GRAY dotted lines.

3. Fold in half as indicated by BLUE lineS.

4. Fold in thirds as indicated by PINK lines.

The final card should measure 3” x 2.5” and fit in your wallet.