Essex sickle cell and thalassaemia service

Essex sickle cell and thalassaemia service offer a range of services to ‘at risk’ couples, families with children affected with sickle cell and thalassemia and/ other unusual haemoglobin variant.

The service ensures mechanisms are in place to ensure linkage of both antenatal and newborn screening results and to ensure effective monitoring of the service. The service works alongside the newborn screening laboratories for coordination and management of affected and carrier results for sickle cell and thalassemia in line with the Essex screening pathway.

The service provides and delivers specialised education and training resources to community health staff, hospital staff and other agencies involved in the antenatal and newborn screening for sickle cell and thalassaemia. The service provides an evidenced based specialist nursing service, with effective clinical leadership, offering counselling, support and signposting.

The service works in partnership with multidisciplinary staff, both in acute and community services, to develop effective links across providers in providing a seamless screening service for sickle cell and thalassemia.

Carrying Haemoglobin E

  • A carrier of haemoglobin E is a healthy person.
  • Carrying haemoglobin E does not weaken them physically or mentally.
  • They do not need any medical treatment because they carry haemoglobin E.

What does it mean to carry haemoglobin E?

Haemoglobin E is one of many possible variations in the blood called haemoglobin gene variants, or haemoglobin variants.

Haemoglobin is what makes blood red. It is packed into red blood cells. Carriers of haemoglobin E have both the usual haemoglobin (haemoglobin A) and an unusual haemoglobin called haemoglobin E. Most also have slightly smaller red blood cells, but more of them than other people.

A carrier will always be a carrier and no-one can catch it from them. They inherited haemoglobin E from one of their parents and could pass it on to their children.

Haemoglobin E is very common among people who originate from Bangladesh, North East India, Burma, or South or South East Asia (including South China).It also occurs among people of Southern Turkish origin.It is found occasionally in the Middle East.

Can carrying haemoglobin E cause any health problems?

Carrying haemoglobin E is not an illness and will never turn into an illness. Carriers can eat what they want and do any kind of work they choose.

Carriers can give blood provided that they are not anaemic (do not have a lower haemoglobin level than usual).

Could a carrier of haemoglobin E have children with a serious haemoglobin disorder?

Only if their partner carries beta thalassaemia.With medical help, such a couple can have healthy children.

What should a carrier do if they are thinking of having children?

They should tell their partner that they carry haemoglobin E and ask him or her to have a blood test ‘for haemoglobin disorders’.This test should be done before they start a pregnancy, or as soon as possible once a pregnancy has started.Their GP can arrange it.

If their partner is not a carrier, there is nothing to worry about.

What should they do if their partner is also a carrier?

They should ask their GP for an immediate appointment with a specialist counsellor. This is particularly important if they have already started a pregnancy.They can also contact the counselling service directly.

Is there anything else that a carrier should do?

If a carrier has brothers or sisters, or already has children, they need to know that they may also carry haemoglobin E.They should ask their GP or practice nurse for a blood test ‘for haemoglobin disorders’.

Carrying Haemoglobin C

  • A carrier of haemoglobin C is a healthy person.
  • Carrying haemoglobin C does not weaken them physically or mentally.
  • They do not need any medical treatment because they carry haemoglobin C.

What does it mean to carry haemoglobin C?

Haemoglobin C is one of many possible variations in the blood called haemoglobin gene variants, or haemoglobin variants.

Haemoglobin is what makes blood red.Carriers of haemoglobin C have both the usual haemoglobin (haemoglobin A) and an unusual haemoglobin called haemoglobin C.Haemoglobin C is different from haemoglobin S (sickle cell).A carrier of haemoglobin C does not carry sickle cell.

A carrier will always be a carrier and no-one can catch it from them.They inherited haemoglobin C from one of their parents and could pass it on to their children.

Haemoglobin C is common among people who originate from West or North Africa and among African Americans and African Caribbeans.It occurs rarely in other groups.

Can carrying haemoglobin C cause any health problems?

Carrying haemoglobin C is not an illness and will never turn into an illness.Carriers can eat what they want and do any kind of work they choose.

Carriers can give blood provided that they are not anaemic (do not have a lower haemoglobin level than usual).

Could a carrier of haemoglobin C have children with a serious haemoglobin disorder?

Only if their partner carries haemoglobin S (sickle cell). With medical help, such a couple can have healthy children.

What should a carrier do if they are thinking of having children?

They should tell their partner that they carry haemoglobin C and ask him or her to have a blood test ‘for haemoglobin disorders’.This test should be done before they start a pregnancy, or as soon as possible once a pregnancy has started.Their GP can arrange it.

If their partner is not a carrier, there is nothing to worry about.

What should they do if their partner is also a carrier?

They should ask their GP for an immediate appointment with a specialist counsellor. This is particularly important if they have already started a pregnancy. They can also contact the counselling service directly.

Is there anything else that a carrier should do?

If a carrier has brothers or sisters, or already has children, they need to know that they may also carry haemoglobin C.They should ask their GP or practice nurse for a blood test ‘for haemoglobin disorders’.

Carrying Haemoglobin S (sickle cell)

  • A carrier of haemoglobin S is a healthy person.
  • Carrying haemoglobin S does not weaken them physically or mentally.
  • They do not need any medical treatment because they carry haemoglobin S.

What does it mean to carry haemoglobin S?

Haemoglobin S is one of many possible variations in the blood called haemoglobin gene variants, or haemoglobin variants.

Haemoglobin is what makes blood red.Carriers of haemoglobin S have both the usual haemoglobin (haemoglobin A) and an unusual haemoglobin called haemoglobin S. 

A carrier will always be a carrier and no-one can catch it from them.They inherited haemoglobin S from one of their parents and could pass it on to their children.

Anyone can carry haemoglobin S. It is very common among people who originate from Africa, including African Americans and African Caribbeans, and in parts of the Middle East and India. It also occurs in people who originate from Portugal, Italy, Greece, Cyprus, Turkey or North Africa. It is found occasionally in North Europeans.

Can carrying haemoglobin S cause any health problems?

Carrying haemoglobin S is not an illness and will never turn into an illness. Carriers can eat what they want and do any kind of work they choose.

There is a small risk that if a carrier gets extremely short of oxygen, they may have an attack of pain called a ‘sickle cell crisis’.People can get short of oxygen, for example, by competing to hold their breath under water.Such activities should be avoided.People who carry haemoglobin S should also avoid extreme endurance exercises in very hot conditions.

Occasionally a carrier of haemoglobin S may see a little blood in their urine.Usually this is nothing to worry about and stops on its own.If it does happen, they should tell their doctor, to make sure that there is not a more serious cause.When a carrier sees a health professional ( doctor, dentist, nurse or midwife ) they should tell them that they carry haemoglobin S, so that they can have appropriate health care. For example if they have an anaesthetic the medical staff need to know.

Carriers can give blood provided that they are not anaemic (do not have a lower haemoglobin level than usual). However every unit of blood is now filtered for additional safety.The red blood cells of people who carry haemoglobin S may get stuck in the filter and block it.The blood transfusion service cannot use blood from people who carry haemoglobin S until this technical problem has been solved.

Could a carrier of haemoglobin S have children with a serious haemoglobin disorder?

Only if their partner also carries a haemoglobin variant. With medical help, such a couple can have healthy children

What should a carrier do if they are thinking of having children?

They should tell their partner that they carry haemoglobin S and ask him or her to have a blood test ‘for haemoglobin disorders’.This test should be done before they start a pregnancy, or as soon as possible once a pregnancy has started.  Their GP can arrange it.

If their partner is not a carrier, there is nothing to worry about.

 

What should they do if their partner is also a carrier?

They should ask their GP for an immediate appointment with a specialist counsellor.  This is particularly important if they have already started a pregnancy.  They can also contact the counselling service directly.

 

Is there anything else that a carrier should do?

If a carrier has brothers or sisters, or already has children, they need to know that they may also carry haemoglobin S.  They should ask their GP or practice nurse for a blood test ‘for haemoglobin disorders’.

Carrying Haemoglobin D Punjab

  • A carrier of haemoglobin D Punjab is a healthy person.
  • Carrying haemoglobin D Punjab does not weaken them physically or mentally.
  • They do not need any medical treatment because they carry haemoglobin D Punjab.

What does it mean to carry haemoglobin D Punjab?

Haemoglobin D Punjab is one of many possible variations in the blood called haemoglobin gene variants, or haemoglobin variants.

Haemoglobin is what makes blood red.Carriers of haemoglobin D Punjab have both the usual haemoglobin (haemoglobin A) and an unusual haemoglobin called haemoglobin D Punjab. 

A carrier will always be a carrier and no-one can catch it from them.They inherited haemoglobin D Punjab from one of their parents and could pass it on to their children.

Anyone can carry haemoglobin D Punjab.It is particularly common among people who originate from Northern India. It occurs occasionally in all other groups, including North Europeans.

Can carrying haemoglobin D Punjab cause any health problems?

Carrying haemoglobin D Punjab is not an illness and will never turn into an illness.Carriers can eat what they want and do any kind of work they choose.

Carriers can give blood provided that they are not anaemic (do not have a lower haemoglobin level than usual).

Could a carrier of haemoglobin D have children with a serious haemoglobin disorder?

Only if their partner carries haemoglobin S (sickle cell). With medical help, such a couple can have healthy children.

What should a carrier do if they are thinking of having children?

They should tell their partner that they carry haemoglobin D Punjab and ask him or her to have a blood test ‘for haemoglobin disorders’.This test should be done before they start a pregnancy, or as soon as possible once a pregnancy has started.Their GP can arrange it.

If their partner is not a carrier, there is nothing to worry about.

What should they do if their partner is also a carrier?

They should ask their GP for an immediate appointment with a specialist counsellor.This is particularly important if they have already started a pregnancy.They can also contact the counselling service directly.

Is there anything else that a carrier should do?

If a carrier has brothers or sisters, or already has children, they need to know that they may also carry haemoglobin D Punjab.They should ask their GP or practice nurse for a blood test ‘for haemoglobin disorders’.

 

Patient information

If you are an adult who is either a carrier of sickle cell/thalassemia/unusual haemoglobin, please contact your GP to have you tested if unsure of what you are, however if this is proven difficult, do email us on sctessex@nelft.nhs.uk and we will be happy to help.

The name of the test to ask your GP for is called haemoglobinopathy electrophoresis, this identifies your genotype.

More information - Antenatal screening

Contact our service in Basildon, Brentwood, Thurrock, Colchester and Harlow

Essex Sickle Cell and Thalassaemia Service
Grays Health Centre,
RM17 8BY

Tel: 0300 300 1521 option 4 
Fax: 0300 300 1621
Opening times: 9am - 5pm, Monday to Friday

Referrals

Referrals will be accepted via sctessex@nelft.nhs.uk. Patients may also self-refer.

Criteria

  • Children with either sickle cell, thalassemia or unusual haemoglobin.
  • At risk couples of haemoglobinopathy.