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Patient Support Intake Form
Today's Date
Date Format: MM slash DD slash YYYY
PLEASE TELL US ABOUT THE PATIENT
Name
*
First
Last
Date of Birth
*
MM
DD
YYYY
Gender
*
Male
Female
Address
*
Street Address
Address Line 2
City
State / Province / Region
ZIP / Postal Code
Afghanistan
Åland Islands
Albania
Algeria
American Samoa
Andorra
Angola
Anguilla
Antarctica
Antigua and Barbuda
Argentina
Armenia
Aruba
Australia
Austria
Azerbaijan
Bahamas
Bahrain
Bangladesh
Barbados
Belarus
Belgium
Belize
Benin
Bermuda
Bhutan
Bolivia
Bonaire, Sint Eustatius and Saba
Bosnia and Herzegovina
Botswana
Bouvet Island
Brazil
British Indian Ocean Territory
Brunei Darrussalam
Bulgaria
Burkina Faso
Burundi
Cambodia
Cameroon
Canada
Cape Verde
Cayman Islands
Central African Republic
Chad
Chile
China
Christmas Island
Cocos Islands
Colombia
Comoros
Congo, Democratic Republic of the
Congo, Republic of the
Cook Islands
Costa Rica
Côte d'Ivoire
Croatia
Cuba
Curaçao
Cyprus
Czech Republic
Denmark
Djibouti
Dominica
Dominican Republic
Ecuador
Egypt
El Salvador
Equatorial Guinea
Eritrea
Estonia
Eswatini (Swaziland)
Ethiopia
Falkland Islands
Faroe Islands
Fiji
Finland
France
French Guiana
French Polynesia
French Southern Territories
Gabon
Gambia
Georgia
Germany
Ghana
Gibraltar
Greece
Greenland
Grenada
Guadeloupe
Guam
Guatemala
Guernsey
Guinea
Guinea-Bissau
Guyana
Haiti
Heard and McDonald Islands
Holy See
Honduras
Hong Kong
Hungary
Iceland
India
Indonesia
Iran
Iraq
Ireland
Isle of Man
Israel
Italy
Jamaica
Japan
Jersey
Jordan
Kazakhstan
Kenya
Kiribati
Kuwait
Kyrgyzstan
Lao People's Democratic Republic
Latvia
Lebanon
Lesotho
Liberia
Libya
Liechtenstein
Lithuania
Luxembourg
Macau
Macedonia
Madagascar
Malawi
Malaysia
Maldives
Mali
Malta
Marshall Islands
Martinique
Mauritania
Mauritius
Mayotte
Mexico
Micronesia
Moldova
Monaco
Mongolia
Montenegro
Montserrat
Morocco
Mozambique
Myanmar
Namibia
Nauru
Nepal
Netherlands
New Caledonia
New Zealand
Nicaragua
Niger
Nigeria
Niue
Norfolk Island
North Korea
Northern Mariana Islands
Norway
Oman
Pakistan
Palau
Palestine, State of
Panama
Papua New Guinea
Paraguay
Peru
Philippines
Pitcairn
Poland
Portugal
Puerto Rico
Qatar
Réunion
Romania
Russia
Rwanda
Saint Barthélemy
Saint Helena
Saint Kitts and Nevis
Saint Lucia
Saint Martin
Saint Pierre and Miquelon
Saint Vincent and the Grenadines
Samoa
San Marino
Sao Tome and Principe
Saudi Arabia
Senegal
Serbia
Seychelles
Sierra Leone
Singapore
Sint Maarten
Slovakia
Slovenia
Solomon Islands
Somalia
South Africa
South Georgia
South Korea
South Sudan
Spain
Sri Lanka
Sudan
Suriname
Svalbard and Jan Mayen Islands
Sweden
Switzerland
Syria
Taiwan
Tajikistan
Tanzania
Thailand
Timor-Leste
Togo
Tokelau
Tonga
Trinidad and Tobago
Tunisia
Turkey
Turkmenistan
Turks and Caicos Islands
Tuvalu
Uganda
Ukraine
United Arab Emirates
United Kingdom
United States
Uruguay
US Minor Outlying Islands
Uzbekistan
Vanuatu
Venezuela
Vietnam
Virgin Islands, British
Virgin Islands, U.S.
Wallis and Futuna
Western Sahara
Yemen
Zambia
Zimbabwe
Country
Phone
Email
*
What is the patient's diagnosis?
*
lymphangiomatosis
Gorham's Disease
Lymphatic Malformation
Other or not sure
If you answered other/not sure to the above question, please enter the diagnosis given by your physician in the space below:
*
How old was the patient when diagnosed?
*
What areas of the patient's body are effected? Check all that apply:
*
Chest
Abdomen
Bones
Skin
What part of the chest is involved? Check all that apply.
*
Heart
Lung(s)
Thyroid
Thoracic Duct
What part of the abdomen is involved? Check all that apply:
*
Liver
Spleen
Kidney(s)
Intestines
Gallbladder
Which bones are involved? Check all that apply.
*
Skull
Ribs
Spine
Pelvis
Shoulder
Arm(s)
Leg(s)
What symptoms have been experienced? Check all that apply.
*
Pain
Fluid Collection(s)
Fracture
Cough/wheezing/difficulty breathing
Severe fatigue (patient unable to attend school/work/activities at least once a week)
slow growth/malnourishment
Fever not associated with acute illness
Frequent infection
Nausea/Vomiting
Diarrhea
Rash
None of the above
Where is the patient's pain located? Check all that apply.
*
Bone(s)
Chest
Abdomen
Head
Where/what type of fluid collections does the patient have? Check all that apply.
*
Lungs/pleural effusions
Heart/pericardial effusions
Abdomen
Arms/Legs
What bone(s) have been fractured?
*
How are the breathing symptoms managed? Check all that apply.
*
Inhalers
Breathing Treatments
Medication
Oxygen
None of the above
What symptom(s) did the patient experience first?
*
Enter "none" if no symptoms were noticed before diagnosis.
How long did the patient experience symptoms before being diagnosed?
*
less than one month
1 to 6 months
6 months to 1 year
1 to 2 years
2 to 5 years
more than 5 years
no symptoms recognized; disease was found while being examined for something else
please select from the drop-down menu
How many doctors did the patient see before being diagnosed?
*
One
2 to 5
5 to 10
more than 10
please select from the drop-down menu
What tests has the patient had to diagnose and follow the disease? Check all that apply.
*
X-ray
CT scan
MRI
Biopsy
Bone Scan
Lymphangiogram/lymphoscintigraphy
DNA Testing
What medications/treatments has the patient had? Check all that apply.
*
Interferon/Intron A
Octreotide
sirolimus/Rapamicin/Rapamune
Pamidronate/Aredia
Fosamax/alendronate
Zometa/Reclast/zoledronic acid
vincristin
Thalidomide
draw fluid from around heart/lungs (pericardiocentesis/pleurocentesis)
permanent drain/shunt
sclerotherapy
drain fluid from abdomen (pleurodesis)
radiation therapy
Total Parenteral Nutrition (TPN)
Medium Chain Triglyceride oil (MCT oil)
Low Fat/No Fat diet
Bone Surgery
other surgery
Patient has NOT taken any medications or had any treatments
Other/Not Listed
If you checked "Other/Not Listed" above, please list medications and/or treatments the patient has had.
*
Do you feel that any of these interventions was effective?
*
YES
NO
Have not had any treatment
Which intervention(s) do you feel have been effective?
*
Does the patient have any disabilities related to the diagnosis?
*
YES
NO
What is the nature of the disability?
*
Does the patient have any chronic or congenital diagnoses?
*
YES
NO
EX: congenital heart disease, diabetes, asthma, genetic conditions like Down syndrome, neurological disorders
Please list the other conditions with which the patient has been diagnosed.
*
INFORMATION ABOUT THE PATIENT'S CARE
Who provides and where the patient receives care related to lymphangiomatosis or Gorham's disease
What is the name of the patient's main doctor for lymphangiomatosis/Gorham's disease?
What is this doctor's area of specialty?
*
Pediatrician
Family Medicine
Internal Medicine
Cardiology/Pediatric Cardiology
Pulmonology/Pediatric Pulmonology
Gastroenterology/Pediatric GI
Orthopedics/Pediatric Ortho
Hematology-Oncology/Pedicatric Hem-Onc
Dermatology/Pediatric Derm
Neurology/Pediatric Neuro
Surgeon/Pediatric Surgeon
Other
Don't Know/Not Sure
please select from the drop-down menu
Please enter the name of the clinic/hospital where the patient receives most of his/her care for lymphangiomatosis/Gorham's
*
Please include the city and state where this facility is located.
How far is this facility from where the patient lives?
*
up to 25 miles
25 to 50 miles
50 to 100 miles
100 to 250 miles
250 to 500 miles
more than 500 miles
please select from the drop-down menu
How often does the patient travel to this facility?
*
once a year
2 to 4 times per year
4 to 6 times per year
more than 6 times per year
less than once per year
Please select from the drop-down menu
ABOUT THE PERSON COMPLETING THE FORM
I am the:
*
Patient
Parent or Legal Guardian with whom the patient resides
Parent or Guardian with whom the patient does NOT reside
Spouse of the patient
Patient's physician or nurse
other
Name of person completing form
*
First
Last
What is your relationship to the patient and why are you completing this form?
*
Is patient living?
*
YES
NO
When did the patient die?
*
What was the cause of death?
*
Address of person completing form
*
Street Address
Address Line 2
City
State / Province / Region
ZIP / Postal Code
Afghanistan
Åland Islands
Albania
Algeria
American Samoa
Andorra
Angola
Anguilla
Antarctica
Antigua and Barbuda
Argentina
Armenia
Aruba
Australia
Austria
Azerbaijan
Bahamas
Bahrain
Bangladesh
Barbados
Belarus
Belgium
Belize
Benin
Bermuda
Bhutan
Bolivia
Bonaire, Sint Eustatius and Saba
Bosnia and Herzegovina
Botswana
Bouvet Island
Brazil
British Indian Ocean Territory
Brunei Darrussalam
Bulgaria
Burkina Faso
Burundi
Cambodia
Cameroon
Canada
Cape Verde
Cayman Islands
Central African Republic
Chad
Chile
China
Christmas Island
Cocos Islands
Colombia
Comoros
Congo, Democratic Republic of the
Congo, Republic of the
Cook Islands
Costa Rica
Côte d'Ivoire
Croatia
Cuba
Curaçao
Cyprus
Czech Republic
Denmark
Djibouti
Dominica
Dominican Republic
Ecuador
Egypt
El Salvador
Equatorial Guinea
Eritrea
Estonia
Eswatini (Swaziland)
Ethiopia
Falkland Islands
Faroe Islands
Fiji
Finland
France
French Guiana
French Polynesia
French Southern Territories
Gabon
Gambia
Georgia
Germany
Ghana
Gibraltar
Greece
Greenland
Grenada
Guadeloupe
Guam
Guatemala
Guernsey
Guinea
Guinea-Bissau
Guyana
Haiti
Heard and McDonald Islands
Holy See
Honduras
Hong Kong
Hungary
Iceland
India
Indonesia
Iran
Iraq
Ireland
Isle of Man
Israel
Italy
Jamaica
Japan
Jersey
Jordan
Kazakhstan
Kenya
Kiribati
Kuwait
Kyrgyzstan
Lao People's Democratic Republic
Latvia
Lebanon
Lesotho
Liberia
Libya
Liechtenstein
Lithuania
Luxembourg
Macau
Macedonia
Madagascar
Malawi
Malaysia
Maldives
Mali
Malta
Marshall Islands
Martinique
Mauritania
Mauritius
Mayotte
Mexico
Micronesia
Moldova
Monaco
Mongolia
Montenegro
Montserrat
Morocco
Mozambique
Myanmar
Namibia
Nauru
Nepal
Netherlands
New Caledonia
New Zealand
Nicaragua
Niger
Nigeria
Niue
Norfolk Island
North Korea
Northern Mariana Islands
Norway
Oman
Pakistan
Palau
Palestine, State of
Panama
Papua New Guinea
Paraguay
Peru
Philippines
Pitcairn
Poland
Portugal
Puerto Rico
Qatar
Réunion
Romania
Russia
Rwanda
Saint Barthélemy
Saint Helena
Saint Kitts and Nevis
Saint Lucia
Saint Martin
Saint Pierre and Miquelon
Saint Vincent and the Grenadines
Samoa
San Marino
Sao Tome and Principe
Saudi Arabia
Senegal
Serbia
Seychelles
Sierra Leone
Singapore
Sint Maarten
Slovakia
Slovenia
Solomon Islands
Somalia
South Africa
South Georgia
South Korea
South Sudan
Spain
Sri Lanka
Sudan
Suriname
Svalbard and Jan Mayen Islands
Sweden
Switzerland
Syria
Taiwan
Tajikistan
Tanzania
Thailand
Timor-Leste
Togo
Tokelau
Tonga
Trinidad and Tobago
Tunisia
Turkey
Turkmenistan
Turks and Caicos Islands
Tuvalu
Uganda
Ukraine
United Arab Emirates
United Kingdom
United States
Uruguay
US Minor Outlying Islands
Uzbekistan
Vanuatu
Venezuela
Vietnam
Virgin Islands, British
Virgin Islands, U.S.
Wallis and Futuna
Western Sahara
Yemen
Zambia
Zimbabwe
Country
Email of person completing form
*
Phone for person completing form
*
As part of our patient support program LGDA tries to match interested patients and families who share common experiences, live in the same regions, and/or receive medical care from the same physicians and facilities. We also match those who have lost loved ones to these diseases. The program is strictly voluntary and you may opt in or out at any time by sending an email to our Director of Patient Support at support@LGDAlliance.org.
Do you wish to participate in LGDA's Patient Matching Program?
*
YES
Not at this time
Submission of this completed form constitutes understanding of its purpose and use by the LGD Alliance and its professional partners, as described on this website on the preceding page.
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