In-Depth Guides

Rare Conditions Directory

Understanding lesser-known health conditions. These conditions may be rare, but getting answers shouldn't be difficult.

Covering conditions affecting fewer than 1 in 2,000 people

Rare diseases affect approximately 3.5 million people in the UK. On average, patients wait 4-5 years for a diagnosis. Early testing can help reduce this wait.

Conditions Directory

8 conditions listed
Endocrine1 in 10,000

Addisons Disease

A rare condition where the adrenal glands do not produce enough hormones. Often called adrenal insufficiency.

Key Symptoms

Extreme fatigueWeight lossDarkened skinLow blood pressure

Diagnostic Tests

CortisolACTHSodiumPotassium
Endocrine2-3 per million

Cushings Syndrome

Caused by prolonged exposure to high cortisol levels. Can result from medication or the body producing too much cortisol.

Key Symptoms

Weight gain (face/trunk)Purple stretch marksEasy bruisingMuscle weakness

Diagnostic Tests

24hr Urinary CortisolDexamethasone SuppressionACTH
Metabolic1 in 200 (genetic)

Haemochromatosis

A genetic condition causing iron overload. The body absorbs too much iron from food, which can damage organs over time.

Key Symptoms

FatigueJoint painAbdominal painSkin darkening

Diagnostic Tests

FerritinTransferrin SaturationIron StudiesGenetic Test
Metabolic1 in 30,000

Wilsons Disease

A rare genetic disorder causing copper to accumulate in the liver, brain, and other organs.

Key Symptoms

FatigueNeurological symptomsLiver problemsKayser-Fleischer rings

Diagnostic Tests

CeruloplasminSerum Copper24hr Urinary CopperLiver Function
Autoimmune1 in 1,000

Pernicious Anaemia

An autoimmune condition where the body cannot absorb vitamin B12 properly due to lack of intrinsic factor.

Key Symptoms

Extreme fatiguePale skinNumbness/tinglingMemory problems

Diagnostic Tests

Vitamin B12Intrinsic Factor AntibodiesFull Blood CountHomocysteine
Endocrine5-10% of hypertension

Primary Hyperaldosteronism

Also known as Conn's syndrome. The adrenal glands produce too much aldosterone, causing high blood pressure and low potassium.

Key Symptoms

Resistant hypertensionMuscle weaknessFrequent urinationHeadaches

Diagnostic Tests

AldosteroneReninPotassiumSodium
Endocrine2-8 per million

Phaeochromocytoma

A rare tumour of the adrenal gland that produces excess adrenaline and noradrenaline, causing episodes of severe hypertension.

Key Symptoms

Episodic hypertensionPalpitationsSweatingAnxiety

Diagnostic Tests

Plasma MetanephrinesUrinary Catecholamines24hr Urine Collection
Autoimmune15-20 per 100,000

Myasthenia Gravis

An autoimmune condition affecting communication between nerves and muscles, causing muscle weakness that worsens with activity.

Key Symptoms

Drooping eyelidsDouble visionDifficulty swallowingMuscle fatigue

Diagnostic Tests

Acetylcholine Receptor AntibodiesAnti-MuSK Antibodies

The Diagnostic Odyssey

Many rare conditions take years to diagnose because they're not on a doctor's radar. Understanding symptoms and relevant tests can help you have more informed conversations with your healthcare provider.

4.5 years
Average time to diagnosis for rare conditions
7+
Doctors typically seen before correct diagnosis
80%
Of rare diseases have a genetic origin

Support & Resources

Getting a Diagnosis

If you suspect a rare condition, consider asking your GP for a referral to a specialist. Private blood tests can help you arrive at appointments with useful data. Some conditions have NHS Specialist Centres that can provide expert assessment.

Read our guide to navigating diagnosis

Need Help Understanding Your Results?

Our team can help you understand blood test results and guide you on next steps. Private testing can be a valuable part of your diagnostic journey.

Get in Touch