Question 1

Anal cancer

Accepted Answer

Anal cancer is a rare cancer that affects more than 200 people each year in Sweden. The tumours are often caused by the HPV virus and develop in the lower part of the colon or near the anal opening. With combined radiotherapy and chemotherapy, the prognosis is good. The licence applies to oncological curative treatment and does not include surgery.

Anal cancer - for you as a referrer

Anal cancer - for you as a patient

Question 2

Differences in Sex Development (DSD)​

Accepted Answer

DSDs include a group of rare conditions that involve abnormal physiological development of the internal or external genitalia. DSD conditions cover a wide range of different diagnoses. Within the hospital, care is mainly organised through the Uppsala University Children's Hospital and the Women's Health Care.

DSD - for you as a referrer
DSD - for you as a patient

Question 3

Endometriosis

Accepted Answer

The mission focuses on advanced surgery, which is needed by around 250 patients in Sweden every year. Endometriosis is a disease that can affect anyone who has their period and involves the spread of endometrial cells, which are normally only found inside the uterus, outside the uterus. Endometriosis most commonly affects the peritoneum in the lower pelvis and/or the ovaries and fallopian tubes. In rarer cases, endometriosis can also grow deep into other organs such as the bowel or bladder.

Endometriosis surgery - for you as a referrer
Endometriosis Centre - for you as a patient

Question 4

Epilepsy surgery assessment and treatment

Accepted Answer

In Sweden, around 81,000 people have been diagnosed with epilepsy and around 5,500 people are affected each year, of which 1,500 are children. Epilepsy can start at any time in life and for many people it is a lifelong condition requiring treatment and something that affects all aspects of life. Most cases can be successfully treated with medicines aimed at reducing the risk of further attacks. In cases of particularly severe epilepsy, surgical treatment may be required, after an extensive investigation.

Epilepsy surgery investigation and treatment - for you as a referrer
Epilepsy surgery assessment and treatment - for you as a patient

Question 5

Extraction of pacemaker devices

Accepted Answer

An increasing number of people with heart rhythm disorders are having pacemakers or defibrillators implanted, leading to an increased need for electrode removal in the event of infections or when the box and electrodes are not working properly.
The national mission includes both the removal (electrode extraction) and possible replacement of electrodes in pacemakers and defibrillators. Pacemakers and defibrillators (ICDs) are devices that, in addition to the battery and microprocessor, have one or more electrodes attached. An ICD has a defibrillator function, which means that the device can deliver a high-energy shock in the event of a life-threatening arrhythmia in the chambers of the heart. There is also a pacemaker function that responds to abnormally slow heart rates.

Question 6

Gendermatoses

Accepted Answer

Gendermatoses are a group of rare hereditary skin diseases that are diagnosed based on skin appearance, skin biopsies and DNA analysis. The most common gendermatoses are Ichthyosis, Keratoderma and Epidermolysis Bullosa. In ichthyosis and keratoderma, the skin is dry and thickened. Lamellar Ichthyosis is the most common, where the baby is often born as a 'collodioma baby', i.e. covered with a thick membrane, unable to sweat. Congenital Ichthyosis causes lifelong problems of general scaling, skin thickening and cracks/wounds. Epidermolysis Bullosa causes a burn-like skin eruption. The skin becomes fragile with blistering and ulcers, which in some cases can be located in mucous membranes. Another example is Darier's disease, which involves skin sloughing and cornification of the skin, particularly on the trunk and face, due to cellular damage. Patients often have problems with skin infections.

Gendermatoses - for you as a referrer
Gendermatoses - for you as a patient

Question 7

HIPEC

Accepted Answer

HIPEC (Hyperthermic Intraperitoneal Chemotherapy) treatment involves surgically removing all visible tumours and giving the patient a course of hot chemotherapy in the abdominal cavity. In Sweden, the treatment has been carried out for about 30 years, mainly on patients with forms of colorectal cancer that have spread to the abdominal cavity or peritoneum, but also for mucinous tumours that usually originate in the appendix. Patients with tumours originating from tissue cells in the peritoneum itself, known as abdominal mesothelioma, are also covered. At Uppsala University Hospital, approximately 60-80 patients a year are operated on with HIPEC.

Question 8

Head and neck paragangliomas

Accepted Answer

In Sweden, around 20-30 patients are diagnosed each year. Paragangliomas are a type of tumour that occurs mainly around the carotid artery, around large nerves or along the jugular vein in the neck. They grow slowly and are only detected when a lump can be felt or seen on the neck. Sometimes the tumours cause specific symptoms, such as discomfort when swallowing, a feeling of pressure and tinnitus. Patients may be offered surgery or radiation therapy. In some cases, patients can also be monitored with X-rays to see how fast the tumours are growing and the patients may then be considered for active treatment.

Head and neck paragangliomas - for you as a referrer

Question 9

Craniofacial surgery

Accepted Answer

At the Craniofacial Centre, we treat children and adults with different types of craniofacial conditions. These conditions can be broadly categorised into two groups: craniofacial malformations and facial injuries (facial trauma). Craniofacial malformations are congenital conditions caused by various disorders of facial and skull development. Examples include craniosynostosis, craniofacial syndromes and cleft lip and palate. Facial trauma consists of acquired injuries to the bones, soft tissues and organs of the face. The Craniofacial Centre brings together multidisciplinary teams for the treatment and complete management of all craniofacial conditions.

Craniofacial surgery - for you as a referrer
Craniofacial Centre - for you as a patient

Question 10

Gender dysphoria, some care

Accepted Answer

The gender you identify as is called gender identity. Gender incongruence means that one's gender identity and registered sex do not match. Gender dysphoria means feeling bad because of gender incongruence. Gender dysphoria assessments are for people who experience significant distress or disability due to gender dysphoria. Gender dysphoria care and research is carried out in collaboration with several areas of activity.
Some care for gender dysphoria - for you as a referrer

Question 11

Lymphoedema surgery

Accepted Answer

National and international patients are referred to Uppsala University Hospital for lymphoedema surgery. For the last couple of years, Uppsala University Hospital has been the only centre in the Nordic region to be named a Centre of Excellence (CoE) in lymphoedema surgery. The NHV licence includes both microsurgical treatment and liposuction. Within the hospital, care is organised mainly through the plastic surgery and oral surgery departments.

Lymphoedema surgery - for you as a referrer
Lymphoedema - for you as a patient

Question 12

Moyamoya disease and syndrome, some care

Accepted Answer

Moyamoya is a rare disease that affects the blood vessels of the brain and leads to impaired blood circulation with recurrent attacks of transient neurological symptoms or stroke. The blood flow to the brain in Moyamoya can be examined using specialised imaging techniques. Highly specialised investigation and neurosurgical treatment of Moyamoya is carried out at Uppsala University Hospital.

Moyamoya - for you as a referrer

Question 13

Neuroendocrine tumours of the abdomen and advanced adrenal tumours, and valve surgery in carcinoid heart disease (CHD)

Accepted Answer

Endocrine Tumours (NET) is one of the hospital's five centres of excellence. Uppsala University Hospital is the only hospital in Europe, and one of the few hospitals in the world, to have a special clinic dedicated entirely to the treatment of patients with hormone-producing tumours in organs such as the pancreas, liver, lungs and thyroid.
Neuroendocrine tumours are a type of hormone-producing tumour that most commonly arise in the gastrointestinal tract or lungs. Treatment is a combination of surgery, chemotherapy, somatostatin analogues, targeted radiation therapy (PRRT), and targeted therapy, which uses drugs or other substances to precisely identify and attack certain cancer cells. Uppsala University Hospital is the only hospital in Sweden where valve surgery for NET-related heart disease is performed.

Abdominal neuroendocrine tumours and advanced adrenal tumours, and valve surgery for carcinoid heart disease (CHD) - for you as a referrer

Question 14

Osteogenesis imperfecta (OI)

Accepted Answer

Osteogenesis imperfecta is an inherited disorder of the bones and connective tissues, the most prominent symptom of which is bone fracture. Each year in Sweden, around 1 in 13,000 babies are born with this disease and in the vast majority it is caused by a defect in the important protein collagen, which is found in many body tissues. It is a rare disease with symptoms that require many specialists to be involved.

Osteogenesis imperfecta (OI) - for you as a referrer
Osteogenesis imperfecta (OI) - for you as a patient

Question 15

Peripheral facial palsy (facial paralysis)

Accepted Answer

In peripheral facial palsy, the muscles of the face are partially or totally impaired. The weakness makes it difficult for the affected side of the face to make facial expressions and can make it difficult to smile and show emotion. Over the past 12 years, Uppsala University Hospital has focused intensively on the patient group through a specific clinic for facial nerve palsy, where patients see several different specialists at the same time; plastic surgeons, ear, nose and throat specialists and physiotherapists, and can be offered the full range of treatments.

Peripheral facial palsy - for you as a referrer
Peripheral facial palsy - for you as a patient

Question 16

Primary sclerosing cholangitis (PSC)

Accepted Answer

PSC is a bile duct disease that affects the liver and mainly affects young men with chronic intestinal inflammation. The condition leads to strictures that cause bile to stagnate. If it goes on too long, the disease can lead to cirrhosis and a high risk of bile duct cancer.

Primary sclerosing cholangitis (PSC) - for you as referrer - change to primary button
Primary sclerosing cholangitis (PSC) - for you as a patient

Question 17

Skeletal dysplasia

Accepted Answer

Severe skeletal dysplasia is an umbrella term for a number of rare skeletal diseases and conditions of which short stature is most common. The diseases cause the bones to have an abnormal shape and/or strength. The change is usually hereditary and is due to a change in the appearance and growth behaviour of the cells. Today, around 700 patients a year are cared for at Uppsala University Hospital, many of whom are children.

Skeletal dysplasia - for you as a referrer

Question 18

Severe burns

Accepted Answer

In the event of a severe burn, it is important that the patient receives professional and accessible care as soon as possible. Uppsala University Hospital's burns care specialists provide round-the-clock guidance to Accident and Emergency Departments across the country. We care for patients of all ages who have suffered burns of varying severity. To ensure that patients receive the best possible care, several different professionals work in teams. We offer treatment, psychosocial care and rehabilitation after burns.

Severe burns - for you as a referrer
Severe burns - for you as a patient

Question 19

Severe skin symptoms

Accepted Answer

National Highly Specialised Care (NHV) for severe skin symptoms includes conditions caused by blister dermatoses (a blistering skin disease that starts with erosions of the oral mucosa and can affect both young and middle-aged people), drug reactions, pyoderma gangrenosum (a rare, inflammatory skin disease not caused by infection that leads to the accumulation of dead cells, tissues and cell debris) and hidradenitis suppurativa (a chronic inflammatory disease affecting the skin in the obese areas), not caused by infection, leading to the accumulation of dead cells, tissues and cell debris) and hidradenitis suppurativa (a chronic inflammatory disease affecting areas of sweat glands, particularly in the armpits, groin and perineal skin.

Severe skin symptoms - for you as a referrer

Question 20

Severe eating disorders

Accepted Answer

majority are women. There are several different eating disorders such as anorexia, bulimia and binge eating disorder. It is a psychiatric disorder that can lead to serious consequences if left untreated.
At Uppsala University Hospital, care is provided at two psychiatric units, one for adults and one for children/young people up to the age of 18. The inflow of new patients has increased in recent years. Around 140 adults and 207 children receive treatment for eating disorders every year.

Severe eating disorders - for you as a referrer

Question 21

Systemic amyloidosis

Accepted Answer

Systemic amyloidosis encompasses a number of different diseases caused by the misfolding of certain proteins. The proteins are stored in various organs, particularly the heart, nervous system and kidneys, but they can also affect the gastrointestinal system, causing serious damage. Symptoms usually appear in adulthood, often as heart failure, numbness and loss of sensation in the feet, lower legs and sometimes hands, but kidney failure and bowel symptoms also occur.

Question 22

Rare kidney diseases

Accepted Answer

Rare kidney diseases in children and adults include congenital nephrotic syndrome, rare polycystic kidney diseases and cystinosis; hereditary diseases that often start in the first years of life and can lead to chronic kidney failure, dialysis and transplantation, among other things.

Rare kidney diseases - for you as a referrer
Rare kidney diseases - for you as a patient

Question 23

Bowel rehabilitation for children

Accepted Answer

Qualified bowel rehabilitation radically changes the lives of children with severe gastrointestinal diseases in both the short and long term. The Uppsala Children's Gastro Centre is a highly specialised, multi-professional unit within Uppsala University Children's Hospital that has been developed to offer the best possible care and intestinal rehabilitation to children with short bowel syndrome, severe motility disorders and other diseases that can lead to chronic intestinal failure. Babies born with short bowel syndrome are often cared for in neonatal intensive care. The disease causes chronic intestinal failure that requires long-term intestinal rehabilitation. Shared care, the hospital's model of continuous collaboration with guardians and local hospital care teams, allows the same high quality care to be offered wherever the child lives in the country.

Question 24

Transjugular intrahepatic shunt (TIPS)

Accepted Answer

TIPS is an endovascular procedure for cirrhosis of the liver, which aims to lower blood pressure in the hepatic portal vein, the vein that receives and carries blood from the abdominal organs to the liver. The increased pressure can lead to the accumulation of fluid in the abdomen and the formation of varicose veins in the oesophagus or stomach, which can cause life-threatening bleeding if they rupture.

Transjugular intrahepatic shunt (TIPS) - for you as a referrer
Transjugular intrahepatic shunt (TIPS) - for you as a patient

Question 25

Vascular Ehlers-Danlos syndrome

Accepted Answer

Vascular Ehlers-Danlos syndrome (vEDS) is a rare and serious inherited disease, caused by a genetic abnormality in the gene that codes for an important strength protein. The disease affects the connective tissue and leads to fragile blood vessels with a high risk of rupture, with life-threatening internal haemorrhage and rupture of internal organs such as the colon and uterus and lung collapse

Vascular Ehlers-Danlos syndrome - for you as a referrer

Our licences in National Highly Specialised Care - NHV

Our licences in National Highly Specialised Care - NHV

NHV licences